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(The comments here are my own and have not been endorsed by the New Jersey Council on Developmental Disabilities, or by any of its members. There is nothing here that is contrary to the Council’s mission or policies, but the statement as a whole is not in any way an official Council statement.)
In this issue of People & Families we mark the 10 year anniversary of the closing of North Princeton Developmental Center. The closure was announced in 1996 and the last people moved out in 1998.
By any measure the closure of the first and only large institution for people with developmental disabilities to be closed in New Jersey was an unqualified success.
People who lived there are now living in community settings and overwhelmingly are more satisfied with that arrangement than with institutional life. Families too—even those vehemently opposed to the closure when it was announced—are positive about where and how their loved ones are living.
Funds used to support people at the center were shifted into supporting them in the community and about $10 million additional dollars were pumped into the community services infrastructure to help support their needs and the needs of other state residents with developmental disabilities living in communities throughout New Jersey.
The closure was so successful that in 1998, in response to the demands of legislators concerned about the growing Waiting List for state services for people with developmental disabilities, a 10-year plan to end that List included plans to further restructure the state’s DD system by closing three more centers.
So why now, nearly 10 years after the closure of NPDC and the end of the timeline for the “Plan to End the Waiting List,” is no one talking much about either? Could it be that opposition to the closure by workers and families—who are understandably heavily invested in institutions both emotionally and financially—has had a third rail effect on future discussions? I believe so.
We have talked about moving people out of developmental centers. And we continue to talk about the urgent need to modernize the state system to respond to the growing and changing needs of its constituents. At the time we even talked about how a developmental center option should remain available for those living at the centers if that’s what they and their families continued to choose.
But any serious discussion—not to mention action—that includes closing additional centers and redirecting that money into community-based supports has been taboo. “We can talk about moving people out of the dc’s” a number of officials have said privately over these past 10 years, “but don’t use the word ‘closure.”
Major restructuring is difficult and messy. People’s lives are involved and there is always much more to major public policy changes than statistics and the bottom lines. It impacts thousands of people and throws many of their lives into uncertainty—most acutely those who live there and their families; and those who work there. Those are very good reasons to be cautious and deliberative, and respectful of those whose lives will be most immediately affected.
However, both the closure and the Plan were done with a good deal of caution and a great deal of deliberation, as well as a tremendous amount of effort to address the concerns of institutional workers and families connected to the centers. Still, political will faltered and as a result, resources-vs.-needs pressures are building and threaten to send this system into crisis.
A recent state Supreme Court ruling said the state Division of Developmental Disabilities could not make rules that limit eligibility for services that were not codified in state law. That ruling could mean that thousands more people are eligible for services from an already overburdened system—a system that is increasingly showing the strains of a “tinkering around the edges” approach.
People with developmental disabilities living in their families’ homes make up nearly two-thirds of the division’s caseload. Those families get less than 10 percent of public funds available to help support people with developmental disabilities. They need and are increasingly asking for more help to keep their family member at home while they wait for the state to offer a broader range of flexible support services that meet individual needs and individual choices. (Services that are, by the way, more cost effective as well as being more appropriate)
Numbers vary, but undoubtedly there are hundreds of people—approximately 1,000 were identified in the state’s recent Olmstead Plan—living at the state’s six large developmental centers who have been identified as ready for community living, who want to move, and who have no opposition to their moving from their families. Again, estimates of the savings of providing supports to those people in the community vary, but everyone agrees they would be significant.
National percentages applied to New Jersey’s population figures show that there could be more than 100,000 people with developmental disabilities in New Jersey. A significant portion of those who have not applied for services might benefit from some help through publicly funded support services and may ask for that help in the future.
Each new budget cycle shows a system with increasing demands and nearly stagnant resources. Public support for people with developmental disabilities has always been generous. Even so, there will never be enough resources to meet the demand, especially if those resources are spread thin between current models of service provision—such as individual and family choice of naturally integrated community supports—and antiquated options, such as institutions and other congregated care facilities.
So what to do? That’s not easily answered, obviously. But before another task force or blue ribbon panel works for another year or so developing another report to burden another set of shelves maybe we should look at some of the lessons of the past—like the North Princeton closure, the Plan to End the Waiting List, the Long Term Care Exploration Report, the DDD Community Living Plan Part I Residential Facilities Closure Process, etc.—and move on.
Ten years ago we talked long and hard about how to restructure the DD system for the future. And we’ve been talking ever since. Isn’t it past time for some action?
Barry Griffith: Still Enjoying Life by Maryann B. Hunsberger
Barry Griffith lived at North Princeton Developmental Center when it closed almost 10 years ago. He had lived in state institutions in New Jersey for most of his life up to that point—since his teens—and was not that happy about it. In fact Griffith built himself a small reputation by running away from developmental centers numerous times during his years living there.
For the past 10 years Griffith has been living in community homes. He lives in Ewing, is an artist, works a day job, and is in love with his girlfriend. He has neither the time nor the inclination to run away anymore.
Griffith attended school in special education classes until age 15, when he began working at a workshop. At 16, he witnessed his father die in a car crash. His mother remarried six months later. The cumulative stresses in Griffith’s life—the stigma of growing up with a disability, the loss of his father, his mother’s remarriage, as well as the untimely death of his brother in a plane crash—were too much for him. He began running away from home, so his mother and stepfather placed him at the E.R. Johnstone Training and Research Center in Bordentown in 1976.
Griffith disliked the institution and ran away several times. He was in and out of Johnstone for a number of years before returning permanently in 1991. When Johnstone closed in 1992, Griffith moved to North Princeton Developmental Center, where he stayed until moving into the community in 1998.
When leaving North Princeton, Griffith chose Community Options to work with him for the first three years. He moved into an apartment in with a roommate, but didn’t like sharing the apartment with a stranger. It took Griffith a while to find out what type of community living he liked. He changed residences several times, first to a group home in Ocean County. “They had no program or job for me to do, so I didn’t want to stay.”
He then moved to an apartment at Project Freedom that he didn’t like, so he relocated to a group home in Ocean County. Finally, he moved to the group home in Ewing where he has resided with two other men for the past four years. “I can deal with living where I am. The group home is close to Allies, Inc. and to my friends. I enjoy my life and have my own bedroom at the group home. I decorate it the way I choose. I take out the trash and do my own laundry, but I don’t have any set chores.”
Griffith chose to transfer to a new agency, Allies, Inc., when Elise Gambino and Krystal O’Dell left Community Options to form Allies, Inc. “I’ve worked with Allies for four years. Allies understands me and supports me in everything. They help me in any situation. I learn from my mistakes, and Allies helps me with this. I have some down days, and some good days, but I am happy.”
Griffith met his girlfriend, Sharon Meeker, when he lived at Project Freedom, where Meeker still lives. He asked Meeker on a date the second time they met, at Horizon, the day program they attend. They have been dating for two months. She is also supported by Allies and works for them. They enjoy eating at restaurants, going to movies and spending time talking. “We aren’t rushing the relationship. We are happy the way we are now. In a couple years, we may be ready to move in together.”
He earns money by doing housekeeping for Allies three hours a day, five days a week. Although his social security check pays his group home rent, he needs the extra income for life’s other essentials—like taking his girlfriend on dates and buying new clothes.
“At the institution, I had to get up at 6 a.m. and go to a lousy, messed up workshop where I did piece work. I like my job at Allies. It’s much better than working at a workshop. It pays better, too. I enjoy having the extra money.”
O’Dell, President and CEO of Allies, first met Griffith when he was living at North Princeton. She finds working with Griffith to be “a joy and a challenge,” she said.
“He’s wonderful and truly makes my day. He’s dually diagnosed with borderline personality disorder and a cognitive disability and sometimes he goes to mental health clinics. We had a very good therapist who works with him. We try to build in as many supports as we can, because he came from a very hard life where he was homeless and eating garbage. He was in psychiatric hospitals and had a family who wasn’t there for him. So, he hits those moments where he needs extra support. He knows we are still there when the going gets tough. He often spends holidays with the families at Allies. He has a great personality and is very engaging.”
Griffith said he absolutely prefers his current situation. He considers going to his day program to be the best thing about community living. He attends Horizon five days a week, five hours a day. They provide transportation to stores; help get prescriptions filled; assists in completing applications and paying bills. The program provides breakfast and lunch each day. They have a hairdresser and podiatrist on site.
“It’s an excellent, wonderful, outstanding program. I did nothing like this at the institutions. My case manager found Horizon for me. Horizon picks me up and takes me to my program, and the group home staff takes me to my job. Horizon has arts and crafts, a pool table, and people I can talk to who help me in any problem situation. I have talent and can draw things. I paint landscapes in pastels and I sell them. I do the pastels at Horizon and at home. People look surprised and shocked when they see my work. I have sold several of my drawings and am going to take part in an art exhibit in Princeton. When I have something on my mind, I go to my art. It relaxes me.”
Oneida Araujo, Outreach Community Service Advisor for Horizon, said she enjoys having Griffith in the program. “Barry is a sweetheart. He always tells me he loves me. He always helps others and interacts with everyone. He has a beautiful spirit. He can draw anything and do a wonderful job at it.”
Griffith has high praise for the staff at Allies and Horizon and he misses nothing about institutional life.
“At North Princeton, they didn’t treat me like a human being. I was like a prisoner. Nobody cared. Nobody tried to help me work out my problems. Institutions shouldn’t even be open now. I can understand putting people who try to kill people in places like that, but people who just have disabilities should be in the community. I hated North Princeton and Johnstone. It was like being in a hospital because they drugged people to calm them down. I couldn’t make any of my own choices. They even took my cigarettes away from me.
“Since I’ve been out my life has been working better. I’m accomplishing things like having a real job. New things are happening in my life, like meeting Sharon. I’m very happy where I am. I have choices now. I can go out for a walk when I want, go to a restaurant, to a movie, have a girlfriend. If a support person comes with us, they don’t sit at the table with me and my girlfriend. They let us have privacy. I never had privacy at North Princeton and I never went to restaurants or movies. I have more freedom. I can go sit outside. I can take a walk to get a cup of coffee. I could never do these things.
“People need direction and support. They need help sometimes to understand themselves. Allies does all of this. They care about me and try to help me work out my problems. We have a bond. When I need to calm down, Allies lets me talk out my problems. They take me out and let me relax and talk about whatever is on my mind. I have a good therapist who helps me with my temper.”
Griffith enjoys spending time with friends. He’s been to Washington, DC on vacation with his friends from Allies and is going back this year. Sharon will go too. “My friends from Allies go out to lunch, to brunch, to dances, bowling, playing pool and different things.”
Griffith especially likes talking to families who have a family member in developmental centers. He recently spoke to a group of families. “I told them that it’s important to work with a good agency to get direction for where their family member should go and what they should do. The families asked me a lot of questions. They asked me to come back again. I’ll do anything to help people with disabilities. Allies helps me, so I want to help someone else. That’s how special they are to me.
“I would tell any family to try to get their family member out of the institutions. They aren’t a good place to be. There is so much in the community. I’d tell them to take their family member out for a day first to let them see what things are like in the community. Allies does that with some people in institutions. Once, I went with them and we took someone out for a day.”
Elise Gambino, vice president and chief operating officer at Allies, said Griffith spends most of his free time with her and her husband Doug Conkling. “I love my job and I love Barry. He’s an important part of my life. He makes you feel good when you see him and he tells you he loves you.”
Gambino and O’Dell want to help Griffith achieve his dreams. He said his ultimate goal would be to live in an apartment with Sharon. “That’s what I want most in my life, to share an apartment of our own with her. I know we will work out. We have a lot of things in common. We like to do all the same things. We go to Horizon together. She likes my art. We spend a lot of time doing group activities with Allies together. We have a dinner date and a dance coming up. I just want keep enjoying life. It’s nice after all those years.”
NPDC: Historic Closure, 10 Years After by Jonathan Jaffe
It was 1995 when a debate erupted over the future of institutions for people with developmental disabilities in New Jersey.
After much planning, state officials announced a 32-month process to close the North Princeton Developmental Center (NPDC) in Montgomery Township. Discussion centered on a controversial three-phase plan, in which approximately 150 residents at a time would be removed from the 535-bed institution and relocated to community settings.
Such news created shockwaves in the developmental disabilities community. Institutionalization had been the status quo to serve people with such disabilities as severe mental retardation for 100+ years. That began to change after the overcrowding and substandard care revealed through the Willowbrook scandal created its own shock waves. States throughout the country reduced populations and closed institutions, pumping money into community-based residential services.
New Jersey also reduced its institutional census and created a community-based system. But its institutional system remained robust, leaving it with the highest per capita institutional population in the nation. And it had only closed two facilities—both relatively small—at the time of the NPDC decision.
Parents and friends of NPDC residents were skeptical that such a move by Gov. Christie Whitman’s administration would be a benefit, as their loved ones were familiar with institutional living and seemed to thrive there. Some claimed in anger that the state was callously turning its back on its most vulnerable population and openly feared the state would not have the financial muscle to provide adequate community care.
Union officials also blasted the plan, as they represented many of the caregivers at NPDC whose future as state employees suddenly was in doubt. There was much at stake for the unions, as about one-sixth of the state workforce at the time – about 10,000 people – were employed through the state’s developmental centers. Union heads, along with the rank-and-file, argued that state workers who went to the private group homes would be paid less and offered fewer benefits. They also expressed strong doubt that—given Whitman’s emphasis on reducing the state work force—jobs would be waiting for them at other state facilities. For the Whitman Administration, closing NPDC was a risky political move. The upstart mayor of Woodbridge, James E. McGreevey, who was gearing up to run against Whitman for Governor in 1997, called the developmental centers “successful” and “responsive to the needs of the client population.” The mayor of Montgomery at the time, Ted Maciag, also called for the status quo.
Such political opposition stoked union members and the families of residents of NPDC and other developmental centers, adding fuel to the debate.
Yet, with such obstacles at hand, the state Department of Human Services moved forward with the plan, which called for the developmental center to officially become “surplus property” by May 1998.
Whitman, in an interview for this article, recalled her administration was determined to move forward with the closure, as it was widely believed that many of the 531 clients at North Princeton had the ability to thrive in the community.
“Yes, families were scared,” Whitman said. “We told them we want their loved ones to be all they can be. Independent living is real and we had the support to make it happen.”
Why North Princeton?
At the time of its closing, North Princeton’s dark history was well-known. Founded in 1898 as the New Jersey State Village for Epileptics, it originally housed a population lumped together as a “dependent, defective, and delinquent class.”
By the 1930s, the thousand-plus-acre village housed more than 1,500 patients and staff in more than 100 buildings. Many spent their entire lives at the Village and, upon their deaths, were buried in a make-shift graveyard that still exists on the site.
As understanding of epilepsy and its treatments improved, the Village lost its mission. Its change in 1952 inaugurated several decades of decline, during which the institution served patients with severe psychiatric or developmental problems. Many of the buildings fell into disrepair, as the developmental center sputtered into the 1990s.
(In April 2005, the remaining 250 acres of the NPDC property was sold to the Township of Montgomery for $5.95 million.)
Robert Nicholas, who headed the state Division of Developmental Disabilities (DDD) from 1989-1998, was charged with deciding which developmental center would be phased out as part of Whitman’s initiative. He was the ideal person to lead the effort, as he coordinated the closure of the Johnstone Training and Research Center in Bordentown Township just three years prior.
“In drafting a closure plan, we looked at all of the developmental centers in the state,” Nicholas recalled. “We couldn’t close the center in Vineland, as it was one of the major employers in the area. We kept coming back to North Princeton, which had plenty of substandard buildings.”
And, as it was the goal of the state to find other state jobs for displaced workers, North Princeton was located near the Trenton Psychiatric Hospital and other state facilities that could use the talents and experience of NPDC employees, Nicholas said.
A Decision is Made
Nicholas, at the time, said most of the residents of NPDC were determined to be ready to live in the community through a study conducted by a Rutgers University assessment team. Others, he said, might be transferred to more structured settings with some form of intensive supervision. The remaining individuals might need to be relocated to another center.
“Certainly, all the people in those units do not need security. In fact, on a day-to-day basis, they are out and unsupervised around campus. They are out in the community going to movies (with supervision similar to that in community-based homes),'' Nicholas said.
As state officials ironed out their strategy, union members vowed to remain a road block, arguing that people who had lived in institutions for many years would not do well on the outside.
Carolyn Wade, who was president of the Communications Workers of America Local 1040 representing 350 workers, said at the time that some clients who have exhibited violent or aggressive behavior are segregated into four housing units.
“Many of them have serious behavioral problems, many of them are not aware of their immediate surroundings,” said Don Klein, another CWA official, at the time.
Eager to get the support of families, state officials tried to calm the unions, who painted a bleak picture of group homes. Nicholas said NPDC workers would be given priority for transfer to other state jobs. They also said any bids by private operators who would operate the community programs would be required to give the NPDC employees first crack at new jobs.
The Plan Goes Public
DHS made the long-anticipated announcement in January 1995 to move 531 residents with developmental disabilities into community-based programs. The announcement met with immediate—and expected—wrath.
“Much of the staff is like family to the residents and the families of the residents,'' said Larry Quinlan, who served as president of the North Princeton Developmental Center Friends and Family Association, at the time. “Some residents consider certain staff members as their second mothers and fathers… The development center is the residents' home.''
Quinlan now lives with his brother Richard in the community, also serving as his support staff. According to Larry, the situation is working well for both brothers.
William Waldman, who served as DHS commissioner, said community placement would be paid for by “redirecting” the state funds provided to operate the center—$39 million in 1995. The money, he said, will be used to contract agencies to run “individually tailored” programs for each client.
“Nothing we are going to do here is going to endanger the public safety,'' said Waldman, as quoted at the time by the Trenton Times. “No one will be placed unless we have an equal or better opportunity. No facility will be closed unless we are convinced we have the capacity to accomplish that.''
He also took the opportunity to announce a series of scheduled public hearings to receive input from family and friends of the residents, as well as care providers and the community as a whole.
Examining the Exodus
State officials needed to track the landmark effort, as its success was expected at the time to pave the way for the closure of other developmental centers through the 1990s. Researchers from Rutgers who had developed early data of residents of the center were called on by DDD to establish the Developmental Disabilities Planning Institute, now located at the Center for Architecture and Building Science Research, New Jersey Institute of Technology in Newark.
Members of the non-partisan group also were used a few years earlier at Johnstone to study the outcome of residents who moved into the community and to other developmental centers during the phase-out of that much smaller institution.
Dawn Hall Apgar, the institute’s director, said her group was asked in 1995 to design and implement a detailed research study for NPDC. The group was asked to evaluate the planning process involved, checking if the consumers’ preferences were presented as viable options.
The group then followed 150 randomly selected individuals for two years, as they adjusted to life in a community setting. The group also tracked 150 NPDC residents who were moved to other developmental centers in New Jersey.
Study participants were based on gender, age and abilities to ensure similar populations in both study groups. As part of the process, the NJIT researchers interviewed consumers, their families and staff.
“Overall, we found that consumers were doing as well or better than they had while living in the developmental centers,” said Apgar, a Clinton resident who has led the institute for nine years. “We found individuals received more training in how to do everyday tasks while living in the smaller community homes. Meanwhile, those who stayed in the development centers had a loss in cognitive functioning over time.”
The researcher said her group’s findings were not a surprise. She referred to a study that was completed in California prior to the closure of NPDC that showed the institutionalization of people with disabilities caused higher death rates among the population.
“We followed that and found community living had no association with higher death rates when you controlled the existing medical conditions, such as seizure disorders,” she added.
Apgar said the successful closure of NPDC was due to “political will, strong support from community-based facilities and advocates of people with disabilities and was, eventually, backed by the Olmstead court decision.” (Olmstead is the landmark US Supreme Court decision of 1999 mandating that people with disabilities receive services “in the most integrated setting possible.”)
Since the conclusion of the NPDC study, the institute has continued its mission to study this population. Researchers have had access to the people living in all seven remaining developmental centers in the state.
“We’ve created a statewide database of their support needs, abilities, medical conditions, behaviors, etcetera, to assist the state in planning for these individuals in a systematic way,” Apgar said.
Moving Forward
While it was widely expected in 1995 that developmental centers would go the way of 8-track cassettes by now, DHS has been unable to close any more institutions.
Why more centers have not closed is a political question, not a policy one, said Ethan B. Ellis, who served as executive director of the New Jersey Council on Developmental Disabilities through the closure of NPDC and up until last year. During the first half of Ellis’ tenure at the Council played a key role in advocating for the state to close developmental centers and redirect resources into community-based supports and services.
“There is a small, but very vocal group of parents, who continue to advocate for the institutions,” Ellis said. “They represent about 200 of the 3,100 people now living in the developmental centers. And they have formed an unholy alliance with the unions, who see their jobs depending on the developmental centers staying open.”
He added that communities throughout the state whose economies rely on the developmental centers remaining open have also fought for institutional living, creating a strong alliance with certain parents and the unions.
Ellis said opponents of institutional closures and resources redirection are ignoring or downplaying some key facts in their public discourse. He notes that some residents of NPDC went into supportive living arrangements and, today, are living independently. Many are working, and are no longer a drain on taxpayers, he noted.
“It costs $135,000-160,000 per each person in a developmental center every year,” Ellis said. “Group homes costs $80,000; supportive living costs $40,000 per person.”
That means, he concluded, that if people in developmental centers were phased into the community, the DHS could provide services for double the amount of people at the same price as it is paying now.
“The outrageous part of this is that DDD in 1999 offered parents a lifetime guarantee for their children to remain in the developmental centers so long as they do not oppose the closing of other developmental centers,” Ellis said. “The parents turned it down. Two hundred parents are keeping 1,500 people in prison.”
Sherryl Gordon, executive director of the American Federation of State, County and Municipal Employees, which represents state employees working in the institutions, said she remains concerned about the level and continuum of care that people receive in group homes.
“The money is not flowing into group homes to match the level of care that we think patients receive in the larger institutional settings,” Gordon said. “This state is providing less financial support for the patients; the dollars are not flowing.”
Gordon said she also remains concerned about regulations in group homes, such as fire safety. In addition, she contends there is a “revolving door” among the staff at these facilities, as they are paid lower than care providers who have state jobs, working in the institutions.
Whitman said the experience with NPDC shows that group homes work. She said she hopes the successful experience of North Princeton consumers now living in the community will demonstrate a continuum of care, as well as ongoing connections with family. “I’m hoping that family members will be more comfortable with the idea that their family members can function in this kind of atmosphere.”
The Governor acknowledged that not all consumers who have moved to the community have thrived, but described that as “inevitable. But to the largest extent, this has been a positive experience,” she said.
Leila Gold, whose 41-year-old son lives in a cottage with 28 other people at the Hunterdon Developmental Center in Clinton, said there is a specific need for institutions in New Jersey. She said her son, David, whose IQ hovers at about 25, would not survive living in the community.
“The same staff is there when David goes to sleep and when he wakes up,” Gold said. “The staff becomes parents to our children. The group homes are known for their high turnover. But at Hunterdon, staff members spend their entire careers working there. The care is much higher than in the community.”
Leo Gold, David’s stepfather, agrees, adding that institutional living has “given my son a good life. It gives him protection against bad things and makes sure he is in top condition, with the best medication and a good education, he said, adding “I am pleased what they do for my son.”
Leila Gold doubts group homes would ensure that David gets his medicine at the same time every day, and also questioned if he would receive the regular medical evaluations he requires.
“I’m not saying community living is bad; it can work for many, many people who should never have been in a developmental center,” said Leila Gold, noting her son is autistic and has brain damage. “The centers are only for people like my son who can’t make it in the community.”
Leo Gold said there are many misperceptions about the state’s developmental centers, as many assume that people with developmental disabilities are just thrown in there. He described Hunterdon as “a community,” where residents go to various programs and events in the community. People come there each day for medical check-ups and other treatments, and it is a complex, professional operation to serve a population of people who can not care for themselves.
Next Steps
Carol Grant, state director of developmental disabilities (at the time this article was written), noted that the total population in the state’s developmental centers has reduced by 653 people since NPDC closed its doors.
When asked why no other developmental centers have closed, Grant said, there needs to be specific appropriations of state money allotted to transition people from developmental centers to the community. She said state officials were wary to close another center because they didn’t like the idea of not giving residents the choice to stay or go.
“The plan we are putting together now is not about closure of developmental centers, but about the civil rights of individuals to live where they want to live,” she said.
Under a law passed in August 2006, the DDD must develop a plan by May 2007 to give residents living in developmental centers who express a desire to live in the community - and whose individual habilitation plan recommends it—the opportunity to live in a community-based setting. (This plan was recently published on the state’s web site.)
Grant said Gov. Jon Corzine has earmarked $40 million in this “very difficult” budget year to move 180 people out of institutions, as well as for infrastructure improvements to support the shifting populations.
DDD officials stress the state law does not require a specific number of people to move, nor does it mandate the closure of any of the developmental centers. DDD is now developing a plan to assist more than 3,000 people who live in the state’s seven developmental centers and want to move into community homes. The plan will be implemented over an eight-year period.
Since 1980, the DDD has been moving people from state-run developmental centers into the community. About 100 people leave the developmental centers and transition to the community each year, state officials said.
“We are now working with people with disabilities and their families as they make their choice,” said Grant. “There is no deadline here for when people need to make a choice. We expect 180 people to move from the developmental centers to the community over the next three years.”
Robert Nicholas, the former DDD director, said he is pleased that the state is now offering people with disabilities a choice of where to live. He is also pleased to see the Corzine Administration financially supporting the effort.
But, he asked, what about the people on the waiting list for services?
“The money follows the person out of the institution; there is no new money to serve people on the list,” he said. “There are people on waiting lists for community programs. But the people coming out of the institutions are being served in these slots with the new money.
“The new money is helping people who are already being helped,” Nicholas said. “The people on the waiting list need to wait until the next pot of money. It’s a dilemma.”
Grant noted the state’s fiscal 2007 budget includes $10 million to help address the community services waiting list, both residential and self directed, as well as family support. “As Dr. Nicholas has indicated, it is always important to invest in the waiting list, which is the front door of the developmental disabilities system,” she said.
Even with the effort to reduce populations in the developmental centers, Grant noted, she expects there will always be a need for the care provided through the institutions, which offer highly-structured, around-the-clock care. Some states offer this service through nursing homes, rather than institutions, which, Grant said, is a topic for future discussions.
“There are no magic answers, as long as services are delivered in the least restrictive setting,” she said. “Every state has unique solutions. The main concern is the civil rights of individuals, and the choices that they and their families now have in New Jersey.”
Harold Stiles’ New Life by Maryann B. Hunsberger
Harold Stiles was born July 28, 1941, a time when our state and nation routinely institutionalized children with disabilities.
His sister, Joan Stiles, recalls playing cards and other games with Harold and their sister when they were children. Harold was the youngest. He attended public school for a short time, learning numbers and words. Then, the seizures started when he was five or six years old. No medications were available for epilepsy back then. His father died when he was only 18 months old, leaving his mother with two daughters and a son who had a developmental disability.
Stiles went to live at North Princeton Developmental Center (known then as the State Village for Epileptics, and shortly afterwards the New Jersey Neuro Psychiatric Institute) soon after his seizures started. His mother and sisters visited him regularly.
“We had to make an appointment to visit him,” says Joan. “When we got there, we’d ring a bell and an attendant would greet us. We had to change his clothing in the waiting room. We couldn’t go to the ward where he lived with many other children and adults in the same room. We’d take him out to eat for a couple hours and reverse the procedure. We couldn’t take him out in the clothing he was wearing at the institution and we couldn’t bring him back in the clothes we brought, for whatever reason.”
Joan Stiles said her brother received many injuries at the institution. At the time officials at the institution said the injuries were due to falling from seizures. Stiles began wearing a helmet.
He also began dragging his right leg and over the years and gradually became paralyzed on his right side. His family never knew why this occurred.
He had surgery on his neck when he was about 30, but neither he nor his sister are sure about why the surgery took place. In his early 40s, he began using a wheelchair. When he was in his 50s, he received a diagnosis of cerebral palsy, which surprised his family.
Stiles still remembers songs from his childhood and can still recognize numbers. To his family’s knowledge, they never educated him at the institution. He worked in a laundry folding washcloths. He can’t recall if they paid him.
Stiles lived at North Princeton until 1997, when he moved into a group home at age 55. People with Disabilities magazine did a feature story on Stiles as he was getting ready to move to community life.
His sisters were happy that he could leave the institution and move into a home setting. But his mother wasn’t there to see it, having died when Stiles was 22.
His sister Joan lives nearby and visits him regularly. She said he doesn’t want to talk about life in the institution.
“The façade of the institution building looked nice, but once we went inside, the smell was bad. He hated the food and lost weight from not eating.”
Now, Stiles loves the food in the group home where he lives in Aberdeen. He has lived with the same four men for ten years.
“They gather for three meals each day around the dining room table. They have sliding glass doors in the dining room that lead out to a patio where they also have barbecues. The attendants cook the meals.
“Because he likes the food so much, he has gained weight and now weighs about 190. He especially likes pasta and sweets. The staff is great. He likes all the staff members. He is happy. He’s doing wonderfully. He has round-the-clock care. The medical is excellent. He has his own room and he just bought himself a new TV. He likes to watch cartoons, movies and baseball. He is a fan of the New York Mets. He is content now.”
Joan Stiles said the two-story house is in a good neighborhood and has three bedrooms upstairs and two downstairs. Harold’s bedroom is on the first floor. He enjoys visiting with his sister when she comes. She brings restaurant food and they spend time together in his room.
“The person who lived in the house before had a child with a disability, so some modifications were already made. The bathtub is elevated for use with a Hoyer lift. It puts him onto the hydraulic lift, which then lowers into the tub. The entrance to the house has no steps or ramp. The chair can go right into the house.”
Stiles said his favorite thing about living in the group home is having a bedroom to himself. “I like having a room by myself. I have all the friends I need right here. Everyone treats me good where I am now. North Princeton was a little off-the-wall. They didn’t treat me too good there.”
Bill Convery is the manager of the Aberdeen group home, run by the Cerebral Palsy Association of Middlesex County. Convery said Stiles and three other men came to the group home together.
“They knew each other from North Princeton and moved here together. The continuity helped them to adjust. Harold adjusted easily. He is happy to be in the community. One man who was in the institution for 30 years couldn’t adjust, but the other three men adapted well.
“Harold is social, likes people and likes attention, so he enjoys community living. He has a good sense of humor and likes to joke around with people. He is witty and sarcastic. We enjoy having him here.”
Convery said Stiles had to adjust to not having everyone deciding and doing everything for him. “At North Princeton, they did everything for him. Harold, having a physical disability, can’t do too many activities of daily living, but we teach him to feed himself with assistance instead of doing it for him. He had to learn that he has the freedom to tell us he wants to go to a movie or go out to eat. Sometimes, he still tends to wait for staff to bring up ideas for activities.
“People who move from their family home into a group home know to ask these things on their own. Because of having lived in an institution, Harold and the other guys didn’t realize they had the privilege of just asking for things. Everything is regimented in the institution. You eat at a certain time, then you do something else, then you eat again. At the group home, if Harold doesn’t want to eat at dinnertime, he can eat later. He can have a snack or a cup of coffee whenever he wants. He now will tell us when he is thirsty and we bring him into the kitchen and help him get himself a drink. We pour the drink, get the straw and hold the cup while he drinks, since he can’t hold it himself.”
Stiles enjoys the activities at the group home. He likes going shopping at the mall, playing games and making arts and crafts.
“He’s friendly with the guys at the group home,” said Convery. “They go out to eat, to the park, to the boardwalk, to the movies. Sometimes, the whole group goes. Sometimes, two guys go with one staff member. He really likes the outings. He enjoys doing and seeing different things.”
The group home is a half hour from the beach. Although Stiles doesn’t go on the sand, he likes the boardwalk. “He has a form-fitted wheelchair, so it would be hard for him to use a beach wheelchair. Instead, they have lunch, play games and enjoy the weather on the boardwalk when they go.”
Stiles said he misses the days when he could walk. “I like to move around without my wheelchair, but most of the time I’m in it.”
Options is the adult service division where Stiles goes for his day program. Convery said the CP Association especially developed Stiles’ day program for older adults with disabilities so they wouldn’t have to go to a work activities training center. Stiles, 65, gets attends his day program each day from 9 a.m. to 3 p.m. in Port Reading.
“We gear it to the things seniors like to do,” said Janet Sabosik, Assistant Supervisor at Options. “They take trips into the community, to the mall, out to lunch, out for coffee and doughnuts. We try to do this once a week. At the center, they do recreational activities, such as music therapy, arts and crafts, card game and bingo. Harold is very friendly and appears to be very happy. He does very well. He is pleasant and gets along well with his peers.”
Stiles’ favorite activities are going out with his peers into the community, doing arts and crafts and senior club. Senior club is a community-based program for senior citizens. Attending senior club each month gives Stiles the opportunity to socialize with seniors who don’t have developmental disabilities.
“They have luncheons, play card games and listen to music. He enjoys socializing, music and eating, so he gets it all at one shot. The seniors in the community treat our residents well and are helpful to them. It’s an enjoyable day for the residents and for the other seniors,” said Sabosik.
Stiles said he likes Options and his favorite thing about Options is that they treat him well. “They treat me good there.”
The day we were supposed to visit Stiles at his group home to do an interview, he was in the hospital. “The staff at Options noticed he didn’t feel well and called 911 immediately,” said his sister. The condition was not serious and Stiles went home the following week.
Stiles’ life is far different from for those early days at North Princeton. Instead of having to change her brother in a waiting room that she never could go beyond, Joan Stiles visits him in the comfort of his own room. They watch TV together, and eat and enjoy each other’s company on the patio if they choose.
The SWOT Team: Celebrating 13 Years by Maryann B. Hunsberger
The SWOT Team (Seeking Ways Out Together), a self-advocacy group comprising individuals with developmental disabilities, formed in 1994 to prepare people living at North Princeton Developmental Center for the institution’s closure in 1998. The team’s 17 members, 11 of whom lived in institutional settings, initially focused on visiting North Princeton to help residents prepare to move into the community.
Although they still visit developmental centers, the SWOT Team has broadened its scope. In the past two years, the team has done significant things that have brought national—and even international—recognition.
In July 2005, they met with a delegation of People First from Japan. A national group, Self Advocacy Becoming Empowered (SABE), made the partnership possible.
“People First is a self-advocacy steering committee in Japan,” said Kate Blisard, founder and coordinator of the SWOT Team. “Their members came to meet self-advocates in New Jersey, Pennsylvania and New York. They are part of the United Nations Conference on Persons with Disabilities that will take place in 2008. I hope that the SWOT Team will be presenting there. The institutions in Japan are horrendous, so the SWOT Team is giving them instruction on how to advocate.
“The Japanese people were so interesting and generous and brought wonderful silk scarves and fans as gifts. All had developmental disabilities and brought their staff advisors, who supported them. The staff was wonderful. We talked about it for a week afterward. They were so eager to learn. The chair of their group, a person with a disability, spoke English. Two staff people also spoke English, so they translated. Nobody on our side spoke Japanese,” said Blisard.
In August of 2005, New Jersey ADAPT formed. ADAPT is an advocacy group that fights for the rights of people with disabilities to live in the community with adequate supports. SWOT Team members who chose to become ADAPT members attended a three-day training. The next month they went to an ADAPT protest in Washington, D.C.
“The purpose was to get a law called MiCassa passed so money would follow the person for services in the community,” Blisard said. “The police arrested some people. Bob Fessel and Roy Carbone didn’t go to jail, because the police couldn’t figure out how to get them there in their highly specialized wheelchairs. Bob has cerebral palsy and uses voice activation. He and Roy Carbone were with ADAPT when they blocked the Senate office. Being an ADAPT member, you learn so many things and meet so many cool people.”
In March 2006, Roy Carbone and Ken Houser of the SWOT Team, along with Anita Clavering of NJ ADAPT, traveled to Nashville to testify about the lack of Medicaid reform in Tennessee. “Their governor didn’t want to use community waivers to keep people in the community, so they were going into nursing homes.”
The SWOT Team went to Maryland that April to present at a conference on self-advocacy for the Maryland Council on Developmental Disabilities. They talked about how to use various advocacy methods to help free individuals from institutions. These methods include self-advocacy, systems advocacy and street advocacy (also known as activist advocacy).
Since the summer of 2006, the team has been learning more about Medicaid reform, deinstitutionalization and saving the government money through community living. The members regularly receive training on different disability-related issues to keep them up to date. They attend workshops and complete homework assignments as part of their training.
“Their trainings help them to have a knowledge base to help people in institutions who want to leave,” according to Blisard.
September 2006 brought another trip to Washington, D.C. with NJ ADAPT to do more street advocacy. The team members protested at the nation’s capitol about national housing issues for people with disabilities.
“When working to get people out of institutions, we need to find affordable housing solutions for them,” said Blisard.
The NJ Council on Developmental Disabilities, through the Progressive Center for Independent Living (an independent living center in Mercer and Hunterdon counties), commissioned the SWOT Team to provide voter education and registration for residents at New Lisbon Developmental Center. This project ran from September to the end of November in 2006.
“The SWOT Team, along with some Monday Morning members, acted as the trainers for this voter education. They used the SWOT Team as a source because of their work and the reputation the SWOT Team and the People’s Support Network have. Luke Koppisch from the DD Council provided the training to the SWOT Team members. They did voter education and staff education concerning the rights of people with disabilities to be voters. They did follow up surveys after the election,” said Blisard.
The SWOT Team has a grant from the People’s Support Network to visit with residents of New Lisbon and Vineland developmental centers who hope to move to the community. They will be doing this for the next year.
The team recently attended a seminar taught by Pennsylvania ADAPT to learn more about the concept of money following the individual so people with developmental disabilities can stay in the community. A partnership of New Jersey social services groups and government entities applied for this grant through the state Medicaid office.
“New Jersey didn’t get this grant, but they are reapplying, so we can do it in our state,” Blisard said.
The SWOT Team recently signed onto a petition to address the conditions of developmental centers in New Jersey. The members also hold fundraisers to help support the projects they do.
Three SWOT Team members participated in making a video, Stolen Lives, Promises Broken. At least 100 people with disabilities talked in the film about their lives in developmental centers and nursing homes.
The SWOT Team continues to have meetings and plan future activities. They have received awards for their work and hope to provide models for other states. They celebrate their thirteenth anniversary this year.
Bonnie Schuller: Regaining a Lost Life by Maryann B. Hunsberger
Imagine living in an institution from the age of two to age 47 with no parents, grandparents or siblings to protect or love you. Bonnie Schuller doesn’t have to—that’s her life story.
Schuller began having seizures at age two after having a high fever. A doctor then claimed she had mental retardation. Her brother and two sisters went to live with other families who adopted them, while she went to live at the New Jersey Neuro-Psychiatric Institute (formerly the State Village of Epileptics), which became North Princeton Developmental Center in 1983.
The now 53-year-old Vineland resident lived at the Institute from age two to nine. She didn’t like the institution because the staff hit her whenever she did anything wrong and because staff molested her. Schuller rode a school bus to a public school and did well academically, but had social difficulties. “I liked going out to school, but the kids picked on me for being the only white child. Two girls at school taught me how to fight because I had to defend myself a lot at school and at the institutions.”
At age ten, she moved to North Jersey Developmental Center, called Totowa State School for Girls in those days. She lived there until age 17, when she moved to the E.R. Johnstone Training and Research Center for two years.
At 19, she returned to North Jersey, where she lived until age 38.
While living at North Jersey, Schuller was part of a class-action lawsuit filed by Steven Gold, a Philadelphia disability-rights attorney who sought to free individuals from institutions.
“ SEQ CHAPTER \h \r 1I found out about self-advocacy when Steve Gold helped me and some other women get out and move into a group home. They said I needed to stay in an institution because I get into fights. The judge said everyone needs to be locked up if that’s the case. I won and I got out. I stayed out for six months. I liked it, but nobody taught me anything about how to live in the community. The staff person in the group home put her hands on me and I hit her in self-defense. So, I went back to a developmental center.”
Kate Blisard, coordinator of the SWOT Team (Seeking Ways Out Together), a self-advocacy group, said, “When you live your whole life in an institution, you need time to get used to the community. Bonnie hit people when she thought she had to defend herself. Institutions can be provoking and cause this type of behavior, which is a survival skill. You learn to hit when someone is going to hit you.”
Still, the state sent Schuller to Hunterdon Developmental Center at age 39. “I used to get into terrible fights there. The staff would hold me down and let other residents beat me. They never tried to help me. They put me in straight jackets and tied me down. They just yelled at me and punished me for everything. This one supervisor would pick on me all the time. I couldn’t take it anymore. I got into a fight with her and broke her arm, so I ended up in Ancora (a state psychiatric hospital). Ancora told them I wasn’t crazy and sent me back to Hunterdon. After that, I went to North Princeton.”
Throughout the years, Schuller spent time in various psychiatric units. She resented that the state shuffled her around like this. “They didn’t want to take care of me at the developmental centers. They didn’t give me a chance to learn. They sent me everywhere. They even sent me to a hospital in Newark for drug addicts, even though I didn’t use drugs. I have had a really hard life.”
Blisard met Schuller at North Princeton when Schuller joined the SWOT Team in 1994. Blisard arranged for her to have an internship at North Princeton doing general office work. Schuller left North Princeton in 1997, when it was preparing to close. “I lasted six months in a supervised apartment. Then I went back into an institution.”
Blisard, who was once Schuller’s guardian, said Schuller had a hard time because nobody had bothered reevaluating her medication or her diagnosis. “The paperwork they used was 20 years old. Family Services put her into a psychiatric hospital. I worked to get her out. DDD said there was no place for her. They sent her from the psychiatric hospital to Vineland Developmental Center. She was in one of the worst buildings on the grounds, so I advocated for her and she got her own room in the developmental center hospital. She spent three years there. She got out of Vineland Hospital in ’99.”
Life in the Community
Finally, Schuller has the supports and services she needs to thrive in the community. She has successfully lived in her own apartment for six years. The apartment is next door to Hope Group Home on the grounds of Vineland Developmental Center. “I now live in a supervised apartment. I like it better than the institution. At first, it was hard moving into the community. I didn’t know anyone. It was lonely before my friend Monica moved upstairs. It took me a while to get adjusted and used to living in the community. I would work, clean my apartment, cook and do the things people do in the community, and doing those things helped me.”
Schuller works at TSI workshop, putting things in boxes, but no work is currently available. She would like to do office work, since she enjoyed that during her North Princeton internship. Nobody has suggested this as a career goal, but the group home staff has been teaching her to type on her computer. “I get bored right now with no work at the workshop. I shouldn’t be in a workshop. I’m too smart for that. I would prefer to have a better job that is steady and doesn’t run out of work. The staff comes over three times a week to help me learn to type better. I don’t have the internet. But, I like to type letters and things like that and save them.”
Since she has no day activity program, she stays home most days. Schuller’s friend Monica lives upstairs in her own apartment. Sometimes, Monica stops by to visit. “Sometimes, we go to Wawa or to Cowtown flea market together. I like shopping. I like having an apartment because I have my privacy. I can get up when I want. I can buy my own food. I cook whatever I want. I can sometimes go to a restaurant with a support person.”
She also likes making crafts and playing bingo. She sometimes goes out to parties and enjoys dancing. She enjoys cooking chicken, ribs and spaghetti. A staff member, Sharon, taught her to cook. “I like everyone who works with me, but I like Sharon the most. She teaches me a lot of things. She tells me not to let people upset me. If I get upset and yell, Sharon talks with me until I calm down. Sharon tells me it’s not worth it to get upset and that I know better. I tell her that sometimes I can’t help myself. She knows when to leave me alone and when to talk with me. Sharon, Elise and Glenn are all nice. I can talk to them all the time.
“In the institutions, do you think anyone sat down and talked with me? No. They would punish me instead. They’d take me to a lockup if I got upset and yelled. I never had a staff person care about me and talk to me before.”
Her favorite part of community living is going to bed when she feels like it, rather than going to bed at a certain time. She also likes choosing which television shows to watch. “We couldn’t watch the TV shows we wanted at the institutions, and now I watch what I want. I like funny shows like Sanford and Son, 227, The Jeffersons, and Leave it to Beaver. I like Judging Amy, Law and Order and Little House on the Prairie. I like watching Lifetime. I can watch TV whenever I want. I like watching TV with the staff, too.
Schuller doesn’t have family nearby to spend time with her. For most of her life, she didn’t know where her family was. She has since learned that her mother died. She found an aunt, whom she visits occasionally. Two months ago, Schuller met one of her sisters and learned that she also has a niece. “My sister lives in Massachusetts. She found me and came to see me. It was a surprise. My sister was upset when she found out how they treated me through the years. It hurts a little that I didn’t get to live with a family. I think I wouldn’t have been treated the way I was if I had lived with a family.”
Because of how she was treated, advocacy is important to Schuller. She advocates with the SWOT Team, visiting different institutions and helping people who want to leave. “We talk to them and tell them what it’s like in the community and we try to help them get out. I think the most important thing is that I am helping people. One person I helped got out and is in the community now.”
She also advocates for herself. “Self-advocacy helped me understand that I have rights. When things don’t go right, I write and send letters to Kate and she sends them to whoever needs to know about it. Most of the time, I get the things I need. I have thought about writing letters to the editor, but haven’t done it yet. I am very strong about letting the world know what people in institutions are going through. I want to write a book about my life. After the mess I went through, I bet my book would be in every store. I want everyone to know what it was like in the institutions, and how they treated me.”
Blisard said Schuller is becoming a strong advocate. “She has come to the point where she is a good advocate for other people. She not only advocates for herself, but for the other people who live in the house with her. She is bringing attention to the problems in the community setting where she is. She went with me to the DDD hearings about the problems with the Olmstead waiting list.”
Blisard is glad Schuller is finally getting help dealing with the problems that a lifetime of institutionalization brought her. “I’m proud to be Bonnie’s friend. She is managing her life, going to therapy and working on her anger. If anyone should have anger, it’s someone who lived her whole life in an institution.”
Schuller finds seeing a therapist helpful in adjusting to community living. Counseling and medication monitoring (for seizures and depression) contributes to her living successfully in the community. “Now, I am okay. It’s different. People are helping me and teaching me this time. I see a counselor each week. The psychologist thinks I may have a personality disorder from being institutionalized. I wouldn’t put a dog in an institution. I think some people there don’t need to be there. In the institution, they had me on too much medicine. It makes you doze off a lot.”
Brenda Fields, a regional supervisor at the Bureau of Guardianship Services, has been Schuller’s guardian for nine years. She believes many factors affect the successful outcome of moving into the community. “The degree of disability, whether the medication given is correct, time to become deinstitutionalized and the provider agency working with the person all are important factors. With the correct medication and good support people, it can be very exciting and liberating. It is also a time of fear and confusion of living in a new world where the person has to learn a new way of life, since institutional living has nothing to do with the real world. Some people have never been to a grocery store, since the food comes to them.
“The agencies in New Jersey are getting to understand this transition more and can help people better. Bonnie is very happy living in the community. She likes having her freedom and a say over what she wants to do. As her guardian, I make sure she has opportunities for decision-making. Being in the community allows her to do this, and these opportunities help her learn how to make more decisions for her. She always calls me about things she wants to do to see if it’s a good idea. If it doesn’t pose any danger, I usually agree to it because she makes good decisions.”
The Future
Schuller hopes to do even more decision-making in her future. “Brenda wants to see if I can be co-guardian for myself with her. I love Brenda. She helps me out a lot. I want to become more independent because I still haven’t done things that I want to do. I’d like to go on a nice vacation to Disney World. I told my caseworker, and I hope it will happen. Sometimes, I travel to Passaic to see my aunt. I stay at a hotel when I visit her. That was my first time in a hotel.
“I never got to do fun things in the institution like I do now, and I like doing these things. I enjoy living in the community. I hope to move into a different apartment where I have more freedom. Having even more freedom is my biggest goal.”
Michael and Lee Weider: “He’s A Lot Happier; and so am I” by Jonathan Jaffe
Ten years after his son moved out of the North Princeton Developmental Center in Montgomery, Lee Weider still has vivid images of him living in the institution.
Weider recalls how his son, Michael, lived in a room with 30 other men with mental retardation. He still thinks about how his son’s living situation was like the barracks he, himself, lived in while enlisted in the Navy after World War II.
Weider, who visited his son at North Princeton every week, also remembers all of the activities his son was involved in at the institution and how the living situation seemed ideal for Michael—at the time.
In 1995, when it was first announced the 500 residents of North Princeton would move to community living programs and the facility would be closed, Weider was gravely concerned. He could not fathom how Michael could continue to thrive when moved into a group home in Brick Township, living with a handful of men and women with developmental disabilities.
“I thought the care at North Princeton was good; I had no complaints,” says Weider, 78, a former Boonton resident who now lives in a retirement community in Manchester, just minutes from his son’s group home in Brick. “I did what I could to stop them from closing North Princeton. I wrote letters and talked to people. But they still closed it. And I was concerned.”
When North Princeton shut its doors, researchers with the Developmental Disabilities Planning Institute at NJIT in Newark selected Michael as one of the consumers they would track as he moved from the institution to the group home.
“We found that Lee’s feelings changed over the initial 90 days after his son moved to the community residence,” recalls Dawn Hall Apgar, director of the Newark-based planning institute. “His attitude was significantly different.”
Weider agrees with Apgar’s observations, noting he quickly came to understand that his son was better off living in a group home than the institution. He recalls his son used to follow him around when he was living at the institution and never left his side.
But when Michael moved to the group home, he became more social – even participating in Friday night dances at The Arc in Lakewood. “When Michael sees me, he gives me a little peck on the cheek and then he's off,” says Weider, noting his son is unable to speak. “I underestimated Michael. He does things I never thought he could do.”
Weider’s about-face received the attention of former Gov. Christie Whitman, who highlighted the family’s experience in her budget message in 2000.
The Governor said that state officials can “take great pride that, working together, we have met the needs of every single person with a developmental disability who was on the urgent waiting list for community placement when I took office. In fact, we have made twice as many placements as any previous administration.”
In her speech, Whitman acknowledged that closing North Princeton was “not a popular decision,” but the right one. She then offered her audience an anecdote about the Weider family, explaining they are “closer to the issue.”
“Lee Weider’s son Michael is 41 years old,” Whitman said, in that 2000 speech. “When Michael was seven, Lee placed him in an institution. As tough a decision as that was, Mr. Weider was even more troubled when he heard the North Princeton Developmental Center was closing. He became one of many opponents of the closure.
“As Lee put it, ‘I responded with stark-raving fear. I said he would never make it.’,” Whitman quoted Weider.
“Today, Michael lives in a group home in Brick operated by The Arc, and both he and his father couldn't be happier,” Whitman said, in her speech. “Michael is busy and thriving, with a social life that includes dances at The Arc every Friday night. And, after putting 5,000 extra miles a year on his car for three decades visiting his son, Lee Weider is now only 10 minutes away.”
Michael now resides with a four other men and women who share similar disabilities. All are asked to participate in the day-to-day chores of the home, from setting the table for dinner to tidying up. Michael has his own room and is fully involved in all aspects of the house.
“Michael truly benefits from participating in community-based activities in a smaller setting,” says Laura Williams, executive director of The Arc, Ocean County chapter, in Lakewood. “The individualized attention he receives during his work program and his home program affords him both socialization and individualized support that he needs.”
On weekdays, Michael and his housemates are driven to the Lakewood Adult Training Center, operated by The Arc. He arrives at 9 a.m. and spends the next six hours participating in vocational and recreational programs, such as gardening or doing puzzles and crafts. The housemates leave at 3 p.m. to go home and prepare for dinner.
In the evenings, Michael and his housemates may go bowling, to the movies or back to Lakewood for a dance or other social activity. The house is well-staffed, with three care providers assigned during the day, while two stay over in the evening.
“Ten years after the closure of North Princeton, Michael is still not communicating through traditional means, but he is leading a full, happy life,” Williams says. “He is fully integrated into the community, and has definitely benefited from the closure of North Princeton.”
Williams notes Michael also benefits from having his father so active in his life, providing “good, natural support.”
Weider, a retired purchasing manager for an electronics company, says he still visits his son every week, preferably over the weekend.
The duo likes to pick up hamburgers and drive over to the R.J. Miller Ocean County Airport in Berkeley Township, where they watch helicopters and airplanes take off and land.
“Michael really loves helicopters and gets excited to see them in action.” Weider says. “I am quite pleased with his care. I am glad he is out of North Princeton. He is a lot happier where he is.
“And so am I.”
The Developmental Disabilities Family Education Project by Maryann B. Hunsberger
Since North Princeton Developmental Center (NPDC) closed in 1998, the Developmental Disabilities Family Education Project, with the support of the Division of Developmental Disabilities, has been reaching out to families of people transitioning to community living. The project is based at the University of Medicine and Dentistry New Jersey (UMDNJ) School of Public Health, Health Systems and Policy Department, in Piscataway. Susan Hammerman is the project director.
Initially, project members worked with people on DDD’s waiting list who lived at home and wanted out-of-home residences. In 2005, DDD invited the project to organize informational activities for families of people living at Woodbridge Developmental Center and New Lisbon Developmental Center.
Due to complaints about safety issues, the Justice Department signed a settlement agreement with the state in August 2004 regarding conditions at New Lisbon, an institution with about 600 residents. The agreement required the state to serve New Lisbon residents in the most integrated setting appropriate to their individual needs, which in many cases means community-based settings.
The Justice Department and the state signed a similar agreement in November 2004 about Woodbridge, home to more than 500 people with developmental disabilities.
In October 2006, DDD expanded the range of options now available to people who will move from developmental centers. “They’ve included opportunities that are available to all DDD clients,” said Hammerman. “People in developmental centers will now be able to self-direct their own services and supports, or to receive services and supports in a traditional way. DDD based these choices on what they learned from developing Real Life Choices.”
(Ed. Real Life Choices is a community supports effort from the state design to provide the supports people want and need in their family homes and reduce and delay the need to out-of-home placements in community-based residencies or developmental centers; these types of flexible, self-directed supports can also be used if and when individuals move to other living arrangements.)
“The options will be wide open,” said Hammerman. “The expansion just occurred, so it is still in the planning and development stage. Support coordinators will develop plans to link individuals to the services and supports that they need. The support coordinators will work for independent provider agencies chosen by DDD through a request for proposal process. They are working out all of the details now.”
Hammerman has been working with Dave Wright, Director of Family Education and Lois Grau, chair of the Health Systems Policy Department, who serves as the principal investigator for the project. Wright explained that the project has four avenues of information for families, including forums, small group meetings, a workbook and a website at www.umdnj.edu/linkweb.
They are revamping the New Beginnings Workbook to fit the new process and available options. The family meetings take place as individual meetings with families or forums that are open to more than one family. “We talk to the families about the person-centered model that the division is following,” said Wright.
The state’s developmental centers have alerted families that invitations to forums and other informational activities will be arriving. “Over the years, families haven’t had much opportunity to get new information. Clear-cut information is important, especially with the new options. Some families hadn’t thought about their family member living in the community before. Some tried a community setting, but came back because of ill-matched community services and the lack of options. The services weren’t tailor-made and individualized to the person. With DDD now using an individualized, person-centered plan to get the right match for each person, it’s their challenge to allow families to see the full picture of current possibilities,” said Hammerman.
Hammerman said they have found families who want to give community living a chance. “Some of these families have been waiting a long time for community living options. Over the next month, we will start to see more of these families. We hope to find even more families wanting information about community placement, so we can clarify what is available and help them make informed choices.”
The first forum took place in Cherry Hill in December 2006 with about 40 people present. Some families and friends present had family members in Woodbridge and New Lisbon, but others had family members in different developmental centers. Community agencies gave presentations, as did staff from DDD. Some individuals, who left North Princeton Developmental Center, spoke about their lives in the community. “It was a very interesting and good first discussion. Barry Griffith (see lead story page ???), an extremely articulate man, explained his life in the community very well.”
The project is choosing the forum locations based on where interested families live. They hope to have a spring forum in central New Jersey.
Hammerman said that their experiences have shown that family involvement in planning and shaping the life of the family member in the community results in better outcomes. “We see this as a way to achieve a very positive outcome with the person’s health, safety and life quality.”
Wright said the partnership between the family, DDD and the community helps make the transition as easy and successful as possible. “Because this is so new, it’s an opportunity for everyone to learn together.”
The next step for the families who attend the forums is to decide if they want to move forward with this. Then, they can start working on a plan for their family member. The developmental center and DDD will help plan with the individuals and their families and refer them to support coordinators. “Our job is to provide the information and then DDD will take it from there.”
DDD expects the process to move more quickly this year, once they identify additional interested families. “In those two centers, there are about one thousand people. The total in developmental centers in New Jersey is three thousand, so this funding includes people wanting to leave any developmental center. The funding covers 180 people over the next two years. This is really a first step. It’s a beginning. It’s just a beginning,” said Hammerman.
Public Hearing: DDD Olmstead Plan by Jonathan Jaffe
On a cold winter night, an auditorium at Union County College in Cranford played host to a state Department of Human Services (DHS) forum designed to gather public comments about how to best transition people with development disabilities from developmental centers to community settings.
Hundreds of seats lined the college’s Roy Smith Theater, yet only about 25 people attended the hearing, which was the first of four public hearings in January the state agency was required to hold as part of a law signed by Gov. Jon Corzine.
DHS, through its Division of Developmental Disabilities (DDD), is developing a plan to assist some of the more than 3,000 people who live in the state’s seven developmental centers to move into community homes. The plan will be implemented over an eight-year period.
The effort comes on the heals of a 1999 Supreme Court decision, known commonly as “Olmstead,” which mandates that people with disabilities should receive services “in the most integrated setting possible.”
Since 1980, the DDD has been moving people from state-run developmental centers into the community. About 100 people leave the developmental centers and transition to the community each year, state officials said.
“Each developmental center resident who wants to live in the community and whose needs can be met in a community setting should have the opportunity to move,” said then Acting DHS Commissioner Clarke Bruno. “We should also respect the wishes of residents who want to remain in a developmental center. Our goal is to provide opportunities and options for people with developmental disabilities.”
The sparse audience in Cranford was informed that 33,000 people with disabilities are on the caseloads of DDD. Two-thirds live with their families. Most of the remainder of those not at the developmental centers live in community settings, such as group homes and supervised apartments, throughout New Jersey
Under a law passed in August 2006, DDD must develop a plan by May 2007 to give residents living in developmental centers who expresses a desire to live in the community—and whose individual habilitation plan recommends it—the opportunity to live in a community-based setting.
DDD officials stress the state law does not require a specific number of people to move, nor does it mandate the closure of any of the developmental centers.
Patricia Merk, Olmstead project director for the DDD, who attended the hearing in Cranford, said her agency will use the input from the hearings to help establish objective criteria for candidates interested in moving, identify the needed resources and determine how the funding, services and homes will be provided.
The plan is due in May and will be submitted to Corzine, the Senate Health, Human Services and Senior Citizens Committee and the Assembly Human Services Committee, she notes.
During the hearing in Cranford, DDD officials heard from family members of people with disabilities and other advocates. While those providing testimony were able to comment on any topic they deemed relevant, DDD officials said they were looking specifically for answers to these three questions:
Jacquelin Crator of Roselle, whose daughter lives at Hunterdon Developmental Center in Clinton, said her daughter is not eligible to move into a community setting.
Yet she used the venue as an opportunity to recommend ways to improve life at the developmental center. She told DDD officials that the Hunterdon facility needs to provide better workshops and medical care for consumers. She believes the staff turnover is high and there needs to be more oversight of consumers. She also claimed that activity reports are tampered with to paint a rosy picture and that there is a chronic waste of funds.
“My daughter does not need two sets of curtains for her room,” Crator said. “She doesn’t need six bras. Three is enough to go around.”
Meanwhile, Takeena Thomas, executive director of New Jersey Self Advocacy Project in Piscataway, told DDD representatives that she is “excited to see the state making an effort to develop a plan” to expand community living programs.
“Many individuals are self-advocates who have stated publicly the desire to live in the community,” Thomas said. “These advocates want the state to know that they are people first and have the right to live in the community and have the right to live a normal lifestyle.”
Frank X. Caragher, executive director of the Arc of Union County in Springfield, described the effort to open community living opportunities to people in developmental centers as “a long time coming.”
“We need to make sure that people want to leave and that they have the supports to succeed,” he told officials. “The state Department of Human Services needs to allow flexibility in the process and back off the growing bureaucracy.”
Caragher added that community providers will play a major role in this transition and the DHS must consider them as “equal partners.”
DDD officials note that each individual who chooses to move into the community will have an individual plan that will include all services and supports they need to ensure their health and well being, including transportation.
Each plan will be developed by an Independent Supports Coordination Team, created and funded by DDD, and will include the individual and their family as part of the team. DDD will be responsible for assuring that providers are qualified, monitoring them to ensure that services and supports are provided effectively.
Public hearings also took place at the New Lisbon Developmental Center in New Lisbon, Middlesex County College in Edison and the North Jersey Developmental Center in Totowa.
Eddie Palmer: It’s Never Too Late by Jonathan Jaffe
When the North Princeton Development Center (NPDC) closed its doors, Eddie Palmer was one of the last residents transitioned to a group home.
Eddie, 56, who is severely retarded and unable to speak, is now in his ninth year living with four other men at a group home in Aberdeen. To his family, the benefits of a group home have been enormous, as Eddie seems to have come out of his shell after years of institutionalization.
Family members talk of how Eddie now seems to have a sense of compassion, rather than desperation. He’s become social, and spends time with his house mates in the living room. He’s gained 30 pounds, to a healthier weight. His family happily notes Eddie finally has a relationship with his younger brother. He even became closer with his father, who died four years ago.
And he hugs his mom more than ever.
“As you get to know Eddie more, you recognize his sounds,” says Mary Norris, director of residential services for Cerebral Palsy of Middlesex County. “We know him well. We know if he’s hungry or upset or just looking for attention. The staff at North Princeton was not able to be as involved in his life.”
“In the institution, if he wanted something, he wasn’t given a choice, and he didn’t have his own space. There was no sense of ‘mine’,” she adds.
This level of care and understanding has been part of the reason why Eddie’s family is happy with his placement in Aberdeen.
“I like this facility more. It’s more family-oriented, and Eddie gets more one-on-one attention. It’s definitely improved his life,” says Eddie’s brother, Gary, 42, a police officer who lives in Sea Girt.
What has made a significant difference for Eddie is living in a smaller environment and having more staff around, Norris says. At NPDC, Eddie resided in a building with 35 other men, and he shared his bedroom with three others. Now, at the group home in Aberdeen, there are only five other men in the entire house and he has his own bedroom.
“When he first came to us, he had self-injurious behaviors. He used to hit himself in the face,” Norris says. “We don’t see that anymore.”
Gary notes that Eddie is now more open, more receptive to family members and more social. “His ability to interact is better,” he adds.
One of the benefits of being in the group home is that Eddie is bused each day to an adult training center in the Port Reading section of Woodbridge, where trained workers continually help him with his socialization skills and sensory integration.
“Things that may have been difficult before are easier for him to manage, and people who may have been offensive to him in a crowd before are less offensive to him now,” Norris notes.
Eddie’s mother, Gloria Palmer of Sea Girt, offers this example: Recently Eddie went to the movie theater with the other men from his group home to see a full-length feature called “Happy Feet.” When he was living at NPDC, she notes, there was no way he would have sat through an entire movie.
“He did well with it. He sat through it and did really well,” Gloria says, with a smile. “We are very proud of him.”
Another difference between the North Princeton facility and Eddie’s group home is that he now has a very specific routine and definitive activities. At the institution, “most of the time they just sat around,” Gloria recalls.
Eddie gets up every morning and has to be on the bus at a certain time to travel to the Port Reading training center for work and interaction.
“He’s calmer now. He has a routine,” Gloria says. She added that North Princeton used to be very noisy, and that too affected his behavior.
Gloria admits she and her late husband, Edward, never expected Eddie would achieve so much after just nine years at the group home. Eddie lived at home with them until he was 21, when it got to the point where they no longer could handle him.
“It was the hardest day of our lives when we had to bring him to North Princeton,” she says.
Even though life at the institution wasn’t perfect, “it was all we knew,” and “my husband and I had heard rumors about the group homes being even worse,” Gloria says. “We were so upset and frightened of the unknown.”
A Difficult Decision
With word in 1995 that NPDC would be closing its doors, Gloria and Edward had to accept a group home setting for their son. Wary, the couple toured several homes throughout Central Jersey. They spoke with many care providers, observed other residents and asked as many questions as they could about life “in the community.”
When they walked into Eddie’s future home in Aberdeen, “we fell in love with it,” Gloria recalls.
Eddie’s father had a harder time accepting the idea of Eddie moving out of North Princeton and into a group home. “I was always more positive about it, and my husband eventually realized that this was better. Before he died, he was happy with the change,” Gloria recalls.
Norris recalls receiving a list of more than a dozen requirements and stipulations that had to be met in order for Eddie’s parents to place him in the group home, as they closely monitored the transition.
Gloria believes the switch to Aberdeen became the landmark moment in her son’s difficult life.
“There’s a big difference, and I never thought I would say it. I never thought I would see the difference,” Gloria said. “It is great to see Eddie going for walks, for rides and watching television.”
Norris attributes Eddie’s success to his strong support network of family members, who are advocates of the system and are always eager to lend a helping hand.
About Eddie
Eddie’s low cognitive level is due to a disorder called PKU (Phenylketonuria), which is hereditary, and, if untreated, causes mental retardation. Due to a missing or deficient enzyme, children with PKU cannot process a part of the protein called phenylalanine, which is present in nearly all foods.
Without treatment, phenylalanine builds up in the bloodstream and causes brain damage and mental retardation, according to the March of Dimes.
Nowadays, all newborn babies are tested for PKU before they leave the hospital. In fact, this was the nation’s first newborn screening test. But, it was too late for Eddie. He was born in 1951, about five years before the test was developed, Norris said.
“For the first three months of his life, Eddie was so alert and bright, but after that we had him up in New York University Hospital, and we found out about PKU,” Gloria says. “It was too late.”
When PKU goes untreated, by three to six months, a baby begins to lose interest in its surroundings. By the time the child is a year old, it becomes obvious that he or she will be developmentally delayed for life.
PKU is inherited when both parents have the PKU gene and both pass it on to their baby. A parent who has the PKU gene, but not the disability, is called a “carrier.” A carrier has a normal gene as well as a PKU gene in each cell. A carrier’s health is not affected in any known way. When both parents are carriers, there is a 25 percent chance that both will pass the PKU gene on to a child, causing him or her to be born with the disorder.
There also is a 25 percent chance that both will pass on the normal gene, and the baby will neither have the disorder nor be a carrier.
Gary, Eddie’s younger brother, was tested for PKU and did not have it, and his three children are all healthy.
Once newborns began being tested for PKU, mental retardation was prevented by treating the baby within the first seven to 10 days of life with a special diet low in phenylalanine. It starts with a special formula; breast milk or infant formula is used sparingly. The child must follow a rigid diet, which contains no milk, cheese, eggs, meat, fish or other high protein foods.
Meals are now prepared for Eddie based on his blood levels, which are tested regularly, Norris says. When he goes out, his meals go with him. A consistent staple for Eddie is non-dairy creamer instead of milk. He also enjoys pasta. The biggest challenge is being able to offer him choices, Norris notes.
Eddie must also take a special powder medication that helps his body to metabolize proteins.
“His diet must be carefully managed. When his levels are off, it gives him a feeling of something crawling under his skin, and this can result in behavioral issues,” Norris says.
The focus on food can become challenging for Eddie, but he has his own snacks in his cabinet, and “he’ll take you to what he wants,” Norris says. “He’ll come to me and take my hand and take me to the cabinet to where his snacks are, and he’ll make sounds and point to what he wants.”
“We are very happy to have him here.”
Michelle Zelenty: Life with Real Choices by Jonathan Jaffe
For the past 10 years that Michelle Zelenty has lived in a group home, her family says she has acquired a sense of independence they never fathomed when she resided at North Princeton Developmental Center (NPDC).
Zelenty, 38, who has autism, severe mentally retardation and is unable to speak, is now living at a group home in Brick administered through The Arc, Ocean County Chapter, Inc. Family members describe Zelenty as much happier and more sociable, as she recognizes that she finally has real choices in her life.
“She did not seem happy at North Princeton,” said Zelenty’s mother, Maxine Musmanno of South Plainfield. “That was an institution. This is home.”
Zelenty’s stepfather, Al Musmanno, dismissed North Princeton’s living conditions as “barracks,” whereas the group home offers a kitchen, a comfortable living room and Zelenty’s own bedroom, containing many of her own possessions.
Zelenty can now choose what she wants to eat, what she wants to wear and how she spends her free time. “Her level of independence has greatly improved,” noted Linda Paton, manager of Zelenty’s group home.
One example of how the group home allows Zelenty to be independent is when the staff takes her out to her favorite restaurants. She looks at her own menu and decides from the pictures what she would like to order. She communicates what she wants to the server by pointing to the picture. If a restaurant’s menu does not have pictures, the staff often brings along picture cards of menu items for Zelenty to select her meal, Paton said.
This is a far cry from Zelenty’s days at North Princeton.
“They had a terrible time getting her to eat at North Princeton, because she just didn’t like the food in the institution,” Zelenty’s mother recalled. “Michelle was extremely thin. She had a hard time gaining weight. When she came home, she acted like she was starved.”
Now, Zelenty’s group home caregivers take her grocery shopping. She is permitted to choose some of her own food, such as snacks and lunch items. Among her favorite foods are cheeseburgers, Wise Cheese Doodles, bologna, coffee and tea.
For Maxine and Al Musmanno, it is hard to believe that they had once advocated their daughter remain in the institution. When word came in the early 1990s that NPDC was closing its doors, the couple worried how Zelenty would fare in the outside world.
“I was totally and completely against Michelle leaving North Princeton, because I didn’t know what to expect,” Maxine said, admitting it did take her daughter a few weeks to adjust to life in a community setting.
But, now, with Zelenty thriving in a group home, the couple can easily recognize how bleak life was for their daughter in an institution. Al openly looks back at the family’s experience at NPDC with disdain.
“At North Princeton, it was an eye-opener every time we went up there,” he said. “There wasn’t much supervision, and we were always worried about her. She wasn’t bonding with anyone there. It was more or less just state workers doing their job.”
Now, a decade later, Zelenty has built strong bonds with the other residents in her group home. They have evolved into a family, rather than a gaggle of “consumers” living under the same roof.
“The change over the years has been incredible. Michelle is happy, she likes to be here, she likes to come back and she’s comfortable,” Paton said.
A Day in the Life
Five days a week, Zelenty and the other residents of the group home are bused to a day program in Lakewood, where she spends six hours working on arts and crafts, job skills training and physical exercise. Zelenty is directed to do various activities that help her improve her focus and concentration. Her exercise routine includes riding a bike, running treadmill and using exercise balls, according to Paton.
During her free time, Zelenty enjoys playing with toys that have small pieces that fit together, as well as looking through books and magazines. “She loves magazines like Family Circle because of the pictures and the movement of the pages,” Maxine noted.
One of Zelenty’s favorite hobbies is listening to music. “She is so fond of all types of music. You put it on; she’s enjoying it,” Paton said.
When Michelle goes home to South Plainfield for a visit about every other month, Al plays games with her that includes cards with pictures. Also, she has many favorite items that are kept at the family home, which she carries them around with her when she’s visiting her parents.
Maxine Musmanno had her daughter evaluated at six months old when she did not seem to be progressing as a typical infant. She was underweight and did not walk until age 2 . As an infant, Zelenty made no eye-to-eye contact and never spoke. She had crying fits and would slap her head. “She was a handful,” Maxine recalled, with a sigh.
One pediatrician early on suspected that Zelenty would never walk, but Maxine was determined to make her baby girl as normal as possible. Maxine recalled she used to “consistently do exercises with Michelle’s legs when she was a baby” and believes that made a considerable difference in her daughter’s life.
When her daughter turned 3, Maxine sent her to a special school in Pennsylvania where the toddler worked intensively with therapists on speech and motor skills. Through this, “Michelle developed a vocabulary of 20 words and learned sign language."
When Zelenty aged-out of that school at around 16 years old, she was suddenly transitioned into NPDC. Al remembers it being a traumatic time for the whole family, who, he said, weren’t alerted to the move beforehand.
Al said his stepdaughter was suddenly thrust into an institution, an unfamiliar place that was home to people with disabilities from three generations.
Maxine recalls the same scenario. “They just up and stuck her in North Princeton overnight. I wasn’t told. I wasn’t consulted. I had no choice,” she said.
When word came that word NPDC was closing, the family was finally given a choice about Zelenty’s living situation. Maxine said she remembers visiting several group homes where Zelenty could live and was happiest with the group home in Brick.
“The Arc had been around for years,” Maxine said, explaining her decision. “They weren’t new. Trial and error had already been done. Even though the group home was a far distance for us, we had to put Michelle first.”
“In the end, we made the right decision,” she said.
Developmental Center Residents Learn about the State Constitution by Maryann B. Hunsberger
On Friday, March 23, Luke Koppisch, coordinator of the Monday Morning Project, talked to residents at the Woodbridge Developmental Center about voting with a disability and proposed changes to the state constitution removing old language about voting that is offensive to people with disabilities.
Myrta Rosa, 49, who attended the talk with Koppisch, is president of the Woodbridge Self-Advocacy Group, president of the New Jersey Self-Advocacy Group and a member of the Monday Morning Middlesex County Network.
Rosa works as a cashier in Woodbridge Developmental Center’s gift shop and workshop five days a week. She received a Hero Award in 2004 from the New Jersey Self-Advocacy Project for her work as an advocate.
“Luke told us about the importance of voting,” Rosa said. “He told us how we could all make a difference by voting. He told us how the New Jersey state constitution speaks about individuals with disabilities, and how the words ‘idiot’ and ‘insane’ are in there. He talked about how the words need to be removed. This would make me very happy.
“He talked about the Monday Morning Project, an organization of clients at Woodbridge who also feel that we should be able to speak out for justice and have equal opportunities in voting and community planning. I feel that Luke’s visit was positive and I look forward to continuing to be an advocate. I vote in every election. A group of us go to the polls together. I love voting. I learn about who to vote for by watching TV and hearing other people speak about voting.”
Rosa has lived at Woodbridge since 1998. “I came here after my parents passed away. I love living where I am. Bina Pathak is a social worker here. I love Bina. She is very good with individuals. We all like her so much. She organized our self-advocacy group. She takes us on trips.”
Pathak said that Rosa is an involved individual. “Myrta has a very positive attitude toward her work duties and is always willing to take responsibility. She keeps her calendar with all Self-Advocacy activities and attends meetings and special events regularly. She is very dedicated for human rights. She goes everywhere. She keeps me busy. She really speaks up a lot. She even wrote a letter to the editor of the Star-Ledger about changing the wording in the constitution.”
Advocates Seek to Remove Offensive Language from State Constitution by Maryann B. Hunsberger
In 1844, Samuel F. B. Morse sent the first electrical telegram; territories west of the Rockies remained in British and Spanish hands; and New Jersey inserted a statement into the state constitution saying, “no idiot or insane person shall enjoy the right of suffrage.”
Fast forward to 2007. Children now send e-mails from their bedroom computers. California and Oregon are an integral part of the United States. And the New Jersey State Constitution . . . still says that “no idiot or insane person shall enjoy the right of suffrage.”
So much for progress.
Thanks to Senate President Richard J. Codey (D-Essex), our state may see some changes in its constitution. In January, Codey introduced a proposal for a constitutional amendment that would remove the stigmatizing terminology.
Codey introduced the proposal—Senate Concurrent Resolution 134 (SCR-134)—in the Senate, and the state Assembly has a companion proposal—Assembly Concurrent Resolution 240 (ACR-240). These proposals aim to delete the words “idiot” and “insane” from the state constitution. In addition, two bills—A-4030 and S-2475—would change the state statute that provides for the requirements to vote (Title 19).
Although the senate version has unanimously passed the Senate, the Assembly version still awaits passage.
Codey called the continued inclusion of the wording “a disgrace” and said, “It’s about time we removed these hurtful stigmas and updated our constitution to reflect 21st century society. By replacing the law that sanctions this insensitive language, we can hopefully erase the stigma attached to mental and cognitive disabilities.”
Luke Koppisch, coordinator of the Monday Morning Project, a grassroots advocacy organization, echoed those sentiments. “We feel the words, ‘idiot’ and ‘insane’ are vague, discriminatory, and have no meaning in today's modern world. Offensive language has no place in our state constitution. This document serves all the state’s citizens and needs to reflect that in the words it uses.”
This amendment would change the constitution’s wording to “no person who has been adjudicated by a court of competent jurisdiction to lack the capacity to understand the act of voting shall enjoy the right of suffrage.” According to Koppisch, the change is consistent with the language found in the court case Carroll v. Cobb, which outline the procedures for denying the right to vote.
Since the Americans with Disabilities Act, the U.S. Constitution, and the U.S. Voting Rights Act already protect the voting rights of people with disabilities, the amendment would not create new rights, but would merely change the offensive language. The amendment would deny the right of suffrage only to those individuals who were determined by a judge to "lack the capacity to understand the act of voting."
The measure would have to pass both houses of the state Legislature, combine into one bill for the governor’s signature and the public would have to vote this bill into law in November. Some advocates have concerns that the public may resist passage of this bill out of fear that people with disabilities might be manipulated into voting for certain candidates.
According to Joe Young, Deputy Director of New Jersey Protection & Advocacy (NJP&A), this issue has arisen in three other states, and citizens in two states voted against the measures. “That’s why the education of the public must include that we are not changing the standard, but the language.”
Young said the ballot will contain a statement attempting to explain why this issue is on the ballot. “Hopefully, people will understand that the intent isn’t to change who gets to vote, but to simply change the offensive language.”
Senator Codey is convinced that with such education, the public will vote in favor of the amendment. "I’m confident that the people of New Jersey will agree with me when we get this measure placed on the ballot.”
Whether or not the new language will make it more difficult for people with disabilities to cast ballots is debatable. “No poll worker would be able to challenge anyone at their polling place. Only a judge could determine a voter’s competency, and the burden of proof would lie with the challenger. We are very in favor of taking out the offensive language, but we want to make very certain that there are no unintended consequences. There may not be any change, but we want to be sure that nothing negative happens,” said Young.
However, a change could occur when deciding whether an individual with a disability requires a guardian. “If this passes, the guardianship process may now include a determination of whether people are eligible to vote.”
Young pointed out that needing a guardian wouldn’t automatically rule out an individual as a voter. “You can’t say that because someone needs a guardian for one thing, they need a guardian for everything. Voting is about making choices. The person may not be able to make financial decisions, but may be able to make a decision about who gets their vote. It’s about whether or not a person knows they are making a decision and what the consequence of the decision is.”
This applies to people with developmental disabilities living in the community or in institutions. In 1976, the courts ruled that living in an institution does not automatically mean a person cannot cast ballots. The appellate court upheld a Burlington County court decision that permitted residents of New Lisbon Developmental Center to mark their ballots. In 2000, another appellate panel ruled that Trenton Psychiatric Hospital patients could vote.
Advocates for people with developmental
disabilities and mental illness, including NJP&A and the Monday
Morning Project, have been working to get this measure passed and to
educate the public. Young said, “Each bill has companion
legislation to explain what the language means.
We have been asking for language
in companion legislation to make the intent of the constitutional
amendment clear. We are working with the Monday Morning groups and
the Mental Health Association to raise these issues and make sure
that the legislators are aware about all of this.” In addition, voter education is taking place in our state’s developmental centers. This instruction includes the formation of Monday Morning Networks. “I have been trying to involve self-advocates at the developmental centers with what we are doing,” said Koppisch. “Forming Monday Morning Networks at their centers allows me to come every few months and give them information and the opportunity to work with our efforts. Some developmental centers have committed efforts to Monday Morning. Woodbridge sends people to meetings, Vineland Developmental Center is working to set up a group, and I have worked with residents of Woodbine on various voting-related activities.”
The constitutions of eight other states—Illinois, Iowa, Kentucky, Minnesota, Mississippi, Nevada, New Mexico and Ohio—also contain the words "idiots and insane" to describe people who cannot vote. Seven other states, including New Hampshire, North Carolina and Pennsylvania, effectively removed similar discriminatory language from their constitution. Koppisch has received calls from other states who want to remove offensive language from their constitutions.
SIDEBAR: Time for a Change
by Maryann B. Hunsberger
It’s been twenty years, but I still remember the day I went to the polls with my neighbor. A handsome candidate stood outside greeting voters. After we entered the building, my neighbor turned to me and said, “He’s cute, so I’m going to vote for him.” She might not have been an educated voter, but nobody called my able-bodied acquaintance insane or an idiot for voting for the good-looking candidate of her choice.
Yet, people with developmental disabilities and mental illness are called idiots and insane in our state constitution concerning their right to vote. This hurts people with disabilities, especially those who have experience name-calling throughout their lives.
Todd Emmons, a Monday Morning member and Voorhees resident who has a disability, knows how words can hurt. “I used to be called the R word—retarded—and it hurt. These words in our constitution are hurtful in the same way. I think it’s important to pass this amendment because I hate those words and it’s not right for people to use them toward us. I don’t like it at all.”
Kim Coll, a Monday Morning member and self-advocate from Cherry Hill, finds name-calling in the constitution inappropriate. “I am upset about these words in the constitution. I do not like people being called names. No one should be. All people should be treated with dignity. Having a disability does not mean I am not smart enough to vote. It may be hard for me to talk, but not to think. I always study political issues, drive myself to the polls and votes in each election.”
Many people with disabilities, including Kerry Walker, a Monday Morning member from Cinnaminson, find the wording insulting. “The way the constitution is now written is offensive to people with cognitive difficulties and it’s not accurate. It’s not right.”
Coll, Walker and Emmons testified in Trenton on the importance of modifying the wording of the state constitution. Coll believes the testimony of self-advocates at the hearings had an impact. Her testimony so moved Mims Hackett, Jr., Chair of the Assembly State Government Committee, that he asked everyone to give a round of applause after she spoke.
Emmons also considered their testimony valuable. “It made me feel good to testify, because people tell me I cannot do things. When I came out of two institutions, they told my mom I couldn’t do anything or be anything. I graduated high school in 1978. Almost two years before Johnstone closed, I showed the staff my high school diploma. They were surprised and didn’t think I could do it. I was so proud and thankful to be a graduate.
“That’s how I felt at the hearings. When I testified at the Statehouse Annex this week and spoke to Senator Weinberg, I thanked her for listening to my point of view. It was a great experience to testify. I was testifying for everybody, not just for me.”
Colleen O’Dell-Multer, a Monday Morning member from Brick, felt that lawmakers took her testimony at the hearings in Trenton seriously. “It’s always exciting and unnerving to testify, but it went great. All the members were attentive and Assemblyman Hackett was very responsive. This change is long overdue. It was incredible to me to find that this archaic language existed in our state constitution. The way they wrote this part of the constitution left it up to the poll workers to decide who could vote. I don’t think our legislators meant for this to happen.”
Walker said the legislative members at the hearings responded positively to those testifying. “They were very supportive and in agreement that these words should be removed.”
Disability advocates and people with disabilities in New Jersey hope Senate President Richard J. Codey’s proposal to remove these words from our constitution will become law. However, the public must vote on the measure once it passes both the State Assembly and Senate. Some advocates fear that when the public votes on whether to remove those words from our state constitution, they could stop those words from being removed.
O’Dell-Multer said, “In the disability community, it’s a concern that the public has to vote on this. People might think that certifiably incompetent people will flood the polls. This isn’t true. Still, the public is so uninformed, there is the possibility that they may not vote the way we want them to. I’m hoping there will be some outreach to the public about this.
“As a poll worker, I’ve seen poll workers question the eligibility of people with disabilities to vote. They didn’t directly challenge the voter, and they did allow them to vote, but the poll workers said things like, ‘She can’t even see. How can she vote?’ The prejudice is still there, unfortunately. We can’t legislate attitude, but we can take the wording out. We can give a more specific definition so that only a person who has an official decree of incompetence from a judge won’t be able to vote.
Still, O’Dell-Multer is hopeful that the public will respond positively. “We have to have faith that there will be enough publicity to show people that we are just removing belittling terms from the constitution. It’s a shame we have to go through a process like this just to get words like ‘idiot’ and ‘insane’ removed from our constitution.”
Emmons is also optimistic. “I think the public will understand the need for this amendment if someone explains how these words hurt.”
Walker hopes voter education will help. “I think there could be a problem at the polls with people thinking that people with disabilities shouldn’t vote, but they need to explain on the ballot that this change will just affect the language.”
John Visicaro: Making an Impact by Jonathan Jaffe
In the fall of 2005, John Visicaro had a decision to make.
To earn his graduate degree in information systems from the New Jersey Institute of Technology (NJIT), he had to work on a ground-breaking technology project.
Visicaro had options; there are plenty of projects in the cutting-edge world of technology. But the 43-year-old Union Township man wanted to work on technology that truly made an impact.
He found Marilyn Tremaine, Ph.D., who was chairperson of the university’s information department. She was working with a talented team of students designing a special computer program to allow people who are blind and visually impaired to surf the Internet.
Such a concept intrigued Visicaro, who was aware that the Internet is notoriously limiting to people with vision problems, especially those who also suffer from other conditions, such as diabetes and Parkinson’s disease.
“I couldn’t think of a more worthwhile project,” he said. “It gave me the opportunity to learn the programming skills I needed.”
While there are several software packages that make the Internet more accessible, the main challenge lies in the fact that HTML, which is a computer code, is not standardized. That means it is nearly impossible to make the entire Internet available to everyone, no matter the disability.
In November 2005, Visicaro began working with the team on the development of a tactile/audio interface that allows users to listen to online newspaper articles through their computer.
Months after he received his graduate degree, he was still volunteering with the group to fine tune the computer program, known as “AudioBrowser.” (A version is available free of charge to anyone on the Internet at www.AudioBroswer.org)
At the time of this interview, Visicaro noted that all members of the high-tech group were serving as volunteers. They all recognized how significantly this technology could directly enhance the lives of people who are blind.
“To complete my degree, I really wanted to work on a research project that can help make people’s lives easier,” said Visicaro, who had Freidriech’s Aphasia, a neurological disorder that hinders language skills. “We are still fine tuning the computer program and hope people will download the software, try it out and let us know what they think.”
While he downplays his role in developing AudioBrowser, there is no argument that Visicaro was a driving force. Through his mastery of computer programming, he was able to create software that makes it possible for blind people to read The New York Times through AudioBrowser.
Visicaro was able to take articles from the newspaper, convert them to a speech format and broadcast them via computer speakers.
Users of the program just need to know the location of a few keys on the keyboard. From these keys, and through audio prompts, users can easily navigate through the different sections of the newspaper. A clear, friendly voice emits from the computer, reading any articles of interest to the user.
Users can also change the speed of the text being read, the volume and other features at the touch of a key. They do not need to memorize specific keystrokes. When a key is pressed, the feature for that key is spoken to the user as he/she hits it.
“If you want to access the newspaper, you would just turn AudioBrowser on and hit a key that says `Read New York Times’,” Visicaro said. “You would then be able to zoom in and out of each article. You would be able to listen to podcasts. You can use the keyboard’s arrow keys to hit the different features. It is great technology that can help a lot of people.”
Bob Lutz of Scotch Plains, who also was a volunteer on the AudioBrowser team, said it had been a great opportunity to work with evolving technologies, as well as to help people who have vision problems.
“My life without the Internet would be a completely different existence,” said Lutz, who was pursuing a doctoral degree in information systems at NJIT. “Blind users on the computer don’t have the same opportunity I have to consume information from the Internet. Through AudioBrowser, I can help them, which is a very rewarding experience.”
Visicaro noted there is no other product on the market like AudioBrowser, which he said can also access such websites such as www.usatoday.com and www.yankees.com. He said the program comes with a free voice, but it sounds digitized. For about $300 people audio equipment can be purchased that features a polite, friendly human voice
Visicaro noted that any technology that accommodates people with disabilities tends to be expensive, beginning at about $900, sold by such companies as Humanware and Freedom Scientific. These devices, he said, are relatively complex and require the user to memorize commands. Also, some of the systems need users to be able to write and read Braille. Visicaro said blind individuals have had to be highly motivated to learn these systems. In contrast, AudioBrowser can be easily accessed and used.
(The group hopes to mass market AudioBrowser at a reasonable price.)
David Denotaris, a statewide manager for the New Jersey Commission for the Blind in Newark, describes AudioBrowser as “neat technology,” although it is limiting in its present form because it can not access many web pages.
Denotaris, who is blind, says he has sampled a number of other technologies that are designed to help blind people access the Internet. The device he commonly uses includes Braille and an audio speaker.
He questions the need for AudioBrowser.
“As a blind person who uses the Internet for research and to purchase merchandise, I don’t want to have to learn how to use another gadget,” Denotaris says. “In my life, I already have a color detector, a note taker, a GPS device and a bar code reader that can tell me the contents of a jar in the supermarket.”
Tests continue on AudioBrowser. The team is building out the system to ensure the technology is maximized, and encourages users to download the software to try it out. The group also plans to add navigation software and to make a PDA version, in which users can access such useful items as calendars, address books, music and to-do lists.
The team has received strong encouragement from the National Federation for the Blind, the New Jersey Commission for the Blind and several local Lions Club Organizations.
John Visicaro: Remembered by Jonathan Jaffe
Following the development of this article, John Visicaro died on January 21 at Care One in Morristown after a long bout with Friedreich’s Aphasia. He was 43.
“What John accomplished with a disability was amazing,” said his mother, Marietta Visicaro. “He did more than a person without a disability. He instilled in everyone he met that anything is possible.”
Mrs. Visicaro said her son moved back to the family home in Union Township nine years ago after his disability made it impossible for him to continue to live on his own. Mrs. Visicaro and her husband, John, renovated their home to accommodate his specific needs.
“It was just so good to hear him every morning say `Good morning, Mom’,” Visicaro recalled. “I miss him being here. My husband and I are having a very tough time with all of this.”
Born in Newark, Visicaro was an environmental chemist for 12 years, an adjunct professor at Seton Hall University for two years, and webmaster and designer for the New Jersey Institute of Technology in Newark for five years.
A 1988 graduate of Kean University in Union, Visicaro received a master's degree in environmental chemistry from Seton Hall University in 1990 and a second master's degree from the New Jersey Institute of Technology in computer science in 2006.
Mrs. Visicaro said one of her son’s proudest moments was developing a website for the Handicapped Scuba Association, based in San Clemente, Ca., a non-profit organization dedicated to improving the physical and social well-being of people with disabilities though scuba diving.
Visicaro was a certified handicapped scuba diver and used equipment customized to accommodate his disability. He frequently traveled to some of the world’s most exotic locations, often diving with others who had disabilities.
“John was very independent,” said Elizabeth Kocot, a friend and clinical social worker with the state Division of Medical Assistance and Health Services. “John had a customized van with a ramp for his wheelchair that brought him right to the driver’s seat. He was then able to drive with manual controls.”
Kocot described Visicaro as the “motivating factor” behind the development of AudioBrowser, the technology he helped devise that allows users to listen to online newspaper articles through their computer. She said Visicaro spent the last months of his life promoting the technology and seeking funding for its advancement.
“He was looking for an organization that could fund AudioBrowser and mass produce it,” she said. “John wanted as many people as possible to benefit from the technology.”
Mrs. Visicaro said her son was very focused on his family, noting his 17-year-old nephew, Daniel LoBrace, delivered the eulogy at his Mass. “Danny seems to be following in John’s accomplished footsteps,” Mrs. Visicaro said. “It was a wonderful eulogy, a real tribute to all John has accomplished in his life.”
Besides his mother and father, surviving are two sisters, Nancy LoBrace and her husband, Frank, and Grace Smith and her husband, E. Paul Smith. He was the uncle of Daniel, Jenna, Cristina LoBrace and Julia and Talia Smith.
Donations in John
Visicaro’s name can be made to the Family Reach Foundation, 25 Homer
St., Parsippany, N.J. 07054. The non-profit group provides support
and financial relief to families fighting pediatric cancers and
other life-threatening diseases.
Caris Corfman: Remembered SEQ CHAPTER \h \r 1by Kathi Wolfe
I love telling you about the people who I am privileged to interview. But now, I have the sad task of letting you know that Caris Corfman, a talented actress, who I interviewed, died at age 51 on January 13 in her apartment in Rockville, Md. after a stroke. (My interview with Corfman appeared in “People with Disabilities” Magazine, “Raising Expectations,” Vol. 14 #2, Dec. 2004)
Corfman, who was born in Boston, grew up in upstate New York and Bethesda, Md. She graduated from Florida State University and then earned a masters degree in fine arts from Yale Drama School. The theatrical bug bit Corfman at an early age. She began performing (with her friend and later collaborator Bratford Watkins) in “Brigadoon,” “Carousal,” and other musicals in high school. Upon graduating from Yale, she burst onto the New York drama scene in the 1980's, creating the role of Katarina Cavaalleri in the original Broadway production of “Amadeus.” Corfman took over the lead role of Constanze Weber when Jane Seymour left the cast. After “Amadeus,” a whirlwind of theatrical, movie and TV roles followed for Corfman–from the Williamstown Theatre Festival to the movie “Funny Farm” (starring Chevy Chase) to the TV show “Law and Order.”
Corfman’s acting career ended when surgery to remove a benign brain tumor left her with a head injury. The section of her brain that controls short term memory and her pituitary gland were damaged. She could not remember when she’d taken medication what she’d had for breakfast earlier that day, Corfman told me when I spoke with her. (I knew that immediately after our conversation, she would forget my name and that we’d talked.) Yet, Corfman could remember soliloquies from plays that she’d performed in years before.
Though, she’d sustained a brain injury, Corfman hadn’t lost her love of performing–from acting to dancing. “Do you fly in your dreams?” Corfman asked me, when I spoke with her at the Olney Theatre in Olney, Md. She added, “That’s what dancing is like for me! I love dancing!” The actress was eager to perform to whatever extent she could, given the limitations created by her head injury.
Corfman decided to work with Watkins to create and perform a one-woman show “Caris’ Peace” about living and performing with a brain injury. She performed the 45-minute show at the Olney, the Flea Theater in New York and in Philadelphia. In these productions, Corfman recited from memory speeches from plays she’s performed decades ago, but read from cue cars the lines that she and Watkins had recently written. Corfman dealt forthrightly with her disability and public attitudes to it in her show. Breaking “the fourth wall’ between audience and performer, she would ask people in the front row to tell her their names, reported David Carr of “The New York Times. Then, Corfman would apologetically inform them that she would forget their names by the end of the performance.
She loved performing again, Corfman told me. “Some well-known actors came to the performance {at the Olney Theatre) and my high school boyfriend came, too,” she said. What Corfman didn’t like, she said, was the condescending attitude that so many people have toward people with cognitive disabilities. Corfman lived in her own apartment and received about 60 hours of “supported living” assistance from the Head Injury Rehabilitation and Referral Service in Rockville, Md., she said. The performer wrote down in her notebook and journal what pills she took, when she ate, who she saw and what ideas she had. This reminded her, Corfman told me, that though she had a brain injury, she had a life. Most of all, Corfman wanted me to understand that though she had no short term memory, she was an adult, capable of living her own life.
During our interview, Corfman gave me a copy of the script of “Caris’ Peace.” In the show, the performer spoke for many people who have sustained cognitive disabilities, when she declared, “I miss freedom...I went from being independent to helpless. Suddenly, I am being told what to do and with whom. I have no choice in matters. Others make choices for me. I am treated like a misbehaving child, which ignites my anger and frustrates me more. I have no say in what goes on in my life, even though I’m living it.”
Corfman told me that she had no master plan for her future, but that she wasn’t going to give up on her life or her art. “Will improvised dance work?” she wondered, mulling over how she could dance when she wouldn’t be able to remember the choreography. As our interview ended, Corfman emphasized what she wanted not only me but the world to know about herself. Speaking of her life, she said, “This train still runs!”
Through our memories of your life and work, your train still runs.
DVD’s: A Lifelong Obsession for Our Intrepid Reviewer SEQ CHAPTER \h \r 1by Kathi Wolfe
I was in the café of a Borders one Saturday afternoon in Silver Spring, Md., deciding what flick to see later that day, when my friend and fellow movie lover Elizabeth stopped by. Elizabeth, a 20-year-old woman with Down Syndrome, was with her mom Chris and her dad Ed. “Mom, can I buy these?” asked Elizabeth, holding a stack of DVDs. “Mother!” she groaned, after Chris nixed any thought of buying them. Elizabeth is a “DVD junkie,” Chris said, adding “movies are one of her favorite daily activities.”
I share Elizabeth’s passion; I, too, crave my DVD fix. Recently, I reviewed several DVD’s featuring characters with intellectual disabilities. Below are my takes on “The Lookout,” “The Ringer,” “Radio” and “Forrest Gump.”
I watched “Forrest Gump” and “Radio” with Elizabeth at her home in Silver Spring, Md. Her mother Chris worked on her computer while Elizabeth and I munched on cookies and watched the movies.
It’s helpful to Elizabeth to see positive portrayals of people with intellectual disabilities in films and TV, her mother told me later in an e-mail. To date, Elizabeth hasn’t seen any movies or TV shows that portray people with cognitive disability disrespectfully, Chris added.
“Negative stereotypes of persons with MR {mental retardation} are harmful to individuals with MR...,” she wrote in her e-mail. “If she wishes, Elizabeth is free to watch movies with negative images of characters with intellectual disabilities, and I’m sure at some point she will,” Chris added. “If Elizabeth sees a film with disrespectful characterizations of people with cognitive disabilities, I just hope I or someone will be there to watch them with her and listen to her concerns.”
“The Lookout”
We tell ourselves stories so we can wake up in the morning, author Joan Didion has observed. Lewis, an ex-con in the Kansas City area of Kansas, who is blind, tweaks this observation a bit in the movie “The Lookout” (directed by Scott Frank). “We tell stories to make sense of our lives,” he tells Chris, his roommate, who has trouble remembering when he woke up. Chris (played by Joseph Gordon-Levitt) was a popular jock in high school (he played hockey and had a girlfriend. These days come to an abrupt end when he is in a car accident. After the crash, Chris is left with a head injury. He’s no longer and a star athlete and his girl has been killed in the auto smash-up. During the day, Chris goes to rehab and sees a counselor to learn how to adapt to life with a brain injury. At night, he works as a janitor at a bank. The rehabilitation institute has arranged for Chris and Lewis (played by Jeff Daniels) to be roommates. Along the way, Chris inadvertently becomes involved in a bank heist.
“The Lookout” is a suspenseful thriller. The snow, the bleakness of winter--the telling details (like the donuts which the security guard brings to Chris at the bank every night) draw you in. The characters with disabilities are portrayed in a thoughtful, believable manner. Lewis, who became blind at a methadone lab, now has his act together. He’s shown walking along streets with a white cane and taking orders at a computer terminal (using a screen reader) for a florist. Chris experiences what many people with brain injuries experience: memory difficulties, sequencing problems, the need to remember to take medications, outbursts of anger and cursing. To cope with these problems, he writes down the pills he’s taken and what he’s done each day in his notebook. As is sometimes the case with people with head injuries, Chris’ family and boss are uncomfortable with his disability.
In “The Lookout,” neither Chris nor Lewis is a plaster saint, and that is what makes them so refreshing to me. Lewis cynically hits on a waitress at a coffee shop (telling her that he and Chris are having a “gimp’s night out”). Chris tears the kitchen apart when he gets frustrated trying to cook supper one evening. It’s not that I want to fall in with some of the people that they come up against. It’s just that I enjoyed watching them in their harrowing (if unwanted) adventure. I think you will, too. It’s been awhile since I held on to the arm of my seat, rooting for the protagonist of a film to pull through. Look for “The Lookout” on DVD sometime soon. The movie is Rated R, under 17 requires unaccompanied parent or guardian.
“Radio”
“Radio,” directed by Mike Tollin, is on the opposite end of the movie spectrum from “The Lookout.” While the later is a sophisticated movie stoked with cynicism, “Radio,” is an uncomplicated picture, based on a sweet, true story. “Radio,” tells the story of the relationship that developed between two real-life people: James “Radio” Kennedy, a man with an intellectual disability and Harold Jones, a football coach. The film is set in the 1970's in Anderson, S.C. Radio (played by Cuba Gooding Jr.) pushes a cart around the town. Kennedy is called “Radio” because he’s always listening to the radio that he carries with him.
Some boys scare Radio when they put him in a shed and throw footballs at him. Jones (played by Ed Harris) sees this and is appalled. He befriends Radio, who is almost completely non-verbal and frightened. Radio’s mother works as a nurse’s aide at the hospital, leaving him alone for most of the day.
The movie takes place at a time before there was any “special education,” let alone mainstreaming. The Education for All Handicapped Children Act wasn’t passed until 1975 and the regs for it would not have been implemented, especially in a small Southern town at the time “Radio” takes place. In this context, what Jones does for Radio is quite progressive. He, with the support of his family (Debra Winger is great in the small role of his wife Linda), makes Radio a kind of mascot for the football team and for the school. Radio cheers the team on, tells people not to run in the halls, and announces what’s going to be for lunch over the school address system. The coach teaches Radio a little about reading and writing.
“Radio,” is well acted. I found myself rooting for Radio, grieving with him when his mother dies, and cheering when the school makes him an honorary member of the 11 grade. Though the film is far from a great piece of filmmaking, I enjoyed the movie. Yet, I found myself wanting more. I wished “Radio,” had flashed forward to tell us a bit more of Kennedy’s story later in life. I wondered why the movie couldn’t have shown us how or where Radio lived after his mom’s death or if he participated in other activities besides football games. But, having said this, I’d still recommend this movie to people with intellectual disabilities and their families. It’s a great story of friendship and acceptance. James “Radio” Kennedy is active today, telling his story and giving speeches.
My friend Elizabeth liked “Radio.” She smiled when Kennedy listened to his radio, but cried when his mother died. “This is so sad,” she said, “I’m going to be so sad when my mom passes.” Seeing my concern, Elizabeth added, “don’t worry. I’ll be all right.” A minute or so later, her mind had turned to something else, and she was fine.
“Radio,” available on DVD, is rated PG.
“The Ringer”
This movie, a PG-13 comedy, directed by Barry W. Blaustein and produced by the Farrelly brothers, was controversial when it was released in December 2005. (“The Ringer” was produced with the cooperation of the Special Olympics. Timothy P. Shriver, Special Olympics chairman, was the executive producer of the flick.) The premise of “The Ringer” raised some eyebrows...among some mainstream movie critics and some in the disability community. It’s not spoiling the movie for you to say that the basic plot of the picture is this: Steve Barker, a former track star, is in a pickle. To save his buddy and his own skin, Steve (played by Johnny Knoxville) needs money ASAP. To get the dough, Steve, egged on by nutty Uncle Gary (played by Brian Cox), opts to cheat the Special Olympics. He goes to the Special Olympics and pretends to be an athlete with an intellectual disability. (Steve names his fake persona Jeffy). The real Special Olympians quickly catch on to Steve’s act. “You talk funny!” one Special Olympian tells Jeffy. “You’re a fake!” shout out the others.
Some people found this story tasteless. When “The Ringer” was released on DVD, the “New York Times” reviewer opined (about the movie), “Tastelessness that morphs into sententiousness...” Others worried because the Farrelly brothers produced the film. The Farrelly brothers are known for their low-brow, gross-out comedies (such as “Dumb and Dumber” and “Something About Mary”). Patricia E. Bauer, the mother of a daughter with Down syndrome who has participated in Special Olympics in Southern California, wrote about these concerns in the “New York Times” shortly before “The Ringer” was released. On the one hand, the Farrelly brothers appear to ridicule persons with disabilities in their movies. (I was outraged by “Something About Mary,” where a male character with mental retardation is taunted and at one point beaten up.) Yet, on the other hand, as Bauer reports, the Farrelly brothers use more actors with all types of disabilities than anyone else in Hollywood.
Peter Farrelly has said that he began using performers with disabilities after being prodded by a friend of his who became a quadriplegic through an accident. “They’re sensitive, but they want to have it both ways...,”Kathleen LeBesco, chairwoman of the department of communication arts at Marymount Manhattan College.
Here’s where I stand on this: I loved “The Ringer.” The film is funny and sweet without being sappy. Several actors with intellectual disabilities are terrific in supporting roles and there are more than 150 extras with cognitive disabilities are extras. I particularly enjoyed Special Olympian Leonard Flowers, who played Jimmy, the athlete, who’s into bling-bling big time. Jimmy is the ego-maniac, annoying winner (he’s won so often that the other Special Olympians root for Steve/Jeffy to beat him) that you love to hate. He shows up in a limousine, demanding that his handlers write him some new speeches. The line “going to Disney Land,” just “doesn’t work for me. Write me something new!” Jimmy huffs.
“The Ringer” offers a rare glimpse of people with intellectual disabilities being human. They’re neither sappily “inspirational,” super-heroic, or helpless. They dance, make friends, flirt, break the rules, train hard for their events in the Olympics and compete. Most of all, I love this film because it turns disability cliches in on themselves. For instance, Steve prepares for his stint at fakery, by renting DVD’s of Hollywood flicks featuring non-disabled actors pretending to have disabilities. (Among the films he watches is “Forrest Gump.”) After being outed and mingling with the Special Olympians, Steve develops a respect for people with cognitive disabilities. “Don’t ever call him that again,” he yells when someone calls one of the Special Olympians a “retard.”
I recommend “The Ringer” to anyone who has a sense of humor.
“Forrest Gump”
The story of “Forrest Gump,” the 1994 Academy Award winning film is so well-known that I’m not going to describe it in detail here. Suffice it to say that Tom Hanks plays Forrest Gump, a man with an intellectual disability and Sally Field plays his mother in this PG-13 film, directed by Robert Zemeckis. Forrest is born in the 1950's in a small southern town, where there is no mainstreaming or special education. Through his mother’s effort, his charming, homespun personality and luck, Forrest goes to college, survives Vietnam, becomes a ping-I pong star, a husband, father and millionaire.
I enjoyed this movie because of its fine acting, pacing and story. Are many people with intellectual disabilities likely to experience all that Forrest does? Probably not. Yet, Forrest presents a loving, yet knowing role model for people with cognitive disabilities. “He didn’t like being called ‘crippled’ anymore than I like being called ‘stupid’,” Forrest says of a lieutenant in Vietnam who became a double amputee.
“Forrest Gump” is a movie that the whole family could enjoy. Of the movie, Elizabeth said, “I didn’t like all the profanity {some of the characters do curse}. But, I loved the sex!” (There are no sex scenes. But there are a few sexual references.)
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PEOPLE & FAMILIES / MAY 2007