New Jersey Council on Developmental Disabilities

In my role as the ‘new kid on the block’ I have looked at many of the past issues of the New Jersey Council on Developmental Disabilities magazines, People with Disabilities and Families. I have noticed several changes over the past year or so. Not only have the two magazines combined under the current name “People and Families,” but the look has changed also. I would venture to say there will be more changes over the next issues as the editorial board and staff attempt to stay current with issues and trends in the developmental disabilities community.

As these changes take place in the format of the magazine, be assured the editorial board and staff are committed to covering issues and stories that affect the lives of people with developmental disabilities and their families. Sometimes a topic may be covered in depth over several issues because of the complicated subject matter. There are many topics that fall into this category that demand ongoing coverage such as health care, transportation and housing. Other articles may cover a specific activity or agency that warrants getting information out to the public. Another may be a celebration of an achievement by an individual with a developmental disability or their family.

There will be some articles and topics that develop as ongoing features in the magazine. For example, there will be opportunity for individuals to respond to articles, or to guest write editorials on subjects that provoke their interest or ire. As with any publication, editorial oversight will be maintained by the editorial board and staff, but ongoing conversations will be encouraged.

From time to time there will be articles covering a specific topic that may include some theoretical or ethical issues and dilemmas. These may be written by guest writers who may have a difference of opinion from certain readers. Obviously, nothing will be published that contradicts the values and purpose of the DD Council. However, this magazine must be counted on to present all views on subjects that demand a forum for innovative and reasonable ideas and dialogue.

As the magazine evolves over the months, I hope you, as the readers, will feel free to comment on what you think is good and what should be improved upon. Also, if you have some good ideas for articles, please let us know. The DD Council magazines are here as a forum for the communication of a variety of ideas and information for the community of people with developmental disabilities, their families, colleagues and neighbors.

Finally, in the center of this issue you will find an article about a very special man who was part of the DD Council staff. Greg Mizanin passed away at the beginning of July having worked for the DD Council as a graphic designer and communications specialist for more than 20 years. As quiet and unassuming as Greg was, the thing I personally will miss so much is his deep laughter outside my office door. Greg was very talented and lent those talents to the look of this magazine, the Monday Morning newsletter and the DD Council website. Greg is sorely missed as a great contributor to the communication efforts of the DD Council, as a great person, and as a good friend by all of us who knew him.

The last time it was considered acceptable to refer to someone with developmental disabilities as an “idiot” was during the Eisenhower Administration.

But while the world has progressed and political correctness has become the norm, somehow the New Jersey Constitution seems stuck in the 1950s – at least on this issue.

You can see if for yourself – in black and white. Check out Article II, Section I, Paragraph 6, where our forefathers address the right to vote. It states, “No idiot or insane person shall enjoy the right of suffrage.”

Quite offensive to people with mental retardation and mental illness, most would agree. And that is why the New Jersey Council on Developmental Disabilities has teamed with Senate President Richard Codey (D-Essex) to remove the archaic language.

Lawmakers first inserted the phrase “(N)o idiot or insane person shall enjoy the right of suffrage.” into the Constitution in 1844—a year before the dome was built on the State House. In 1976, the Appellate Division of the Superior Court of New Jersey declared that the words "idiot" and "insane" were outdated and offensive and no longer had any legal meaning.

Yet the language languished on the pages of our Constitution, last overhauled at Rutgers University in New Brunswick in 1947.

Now that both houses of the state legislature have passed resolutions to put a ballot question on removing the language from the Constitution, the archaic, offensive and stigmatizing language may finally be dropped. In its place the words “person who has been adjudicated by a court of competent jurisdiction to lack the capacity to understand the act of voting” would codify existing laws governing who is eligible to vote.

Senate President Richard Codey (D-Essex) introduced the amendment following discussion’s with the New jersey Council on Developmental Disabilities’ Monday Morning Project, a grassroots advocacy group, which had taken on the issue.

“The fact that this language has remained in our constitution for so long is a disgrace,” Codey said. “Not only is it insensitive, but it does not take into account the individual circumstances of people with varying degrees of disabilities."

Specifically, Codey introduced a concurrent resolution (SCR-134) that would amend the constitution and a bill (S-2476) that would change the language in the State Statute. Assemblymen Joseph Cryan (D-Union) and James Whelan (D-Atlantic) introduced companion legislation in the Assembly, ACR-240 and A-4030. The amendment resolutions passed both chambers unanimously.

The measure will now go before voters in November for final approval by simple majority.

Dave Tag of Voorhees, who testified before the Senate and Assembly committees says disability groups need to come together to educate voters about the importance of the upcoming ballot question.

“We need to launch a public awareness campaign to spread the word,” Tag says. “We all need to come together for this fight. That’s the only way we can win this.”

It is important to note this change to the Constitution would not offer additional rights to people with developmental disabilities. The right to vote for all is safeguarded under such important documents as the U.S. Constitution, the U.S. Voting Rights Act and the Americans with Disabilities Act.

Only those restricted from voting in New Jersey, under the amendment, would be people who a judge deems "lack the capacity to understand the act of voting."

Joseph Young, deputy director of New Jersey Protection Advocacy, believes there are not enough safeguards in place to ensure people with disabilities are not blocked from their right to vote.

“Removing language which people perceive as stigmatizing and insulting is a good idea, but we want to make sure the language that replaces the current language doesn’t make it more difficult for people with disabilities to vote,” Young says.

Young sees Codey’s amendment receiving voter support in November if the public is properly informed of the question’s purpose. He hasn’t heard of any opposition to the amendment, but similar referendums in other states have failed because members of the public misunderstood the question, he adds.

“In a couple of other states there was a concern that by voting ‘yes,’ they were letting people who don’t know what they’re doing go ahead and vote,” Young said. “That’s not the case. The intent is not to change the qualifications to vote, but to remove this bad, outdated language.”

The legislation was drafted by Monday Morning in conjunction with the New Jersey Department of the Public Advocate, the state Office of Legislative Services and Codey’s office.

Luke Koppisch, a council staff member who coordinates the Monday Morning Project, the council has launched an online petition to show support for the bill at http://www.petitiononline.com/9844511/petition.html

Mr. Jaffe’s article, “An Historic Closure, Ten Years After,” painted a very true picture of 200 parents, some communities whose economies rely on the developmental centers remaining open, and unions forming an alliance and therefore imprisoning 1,500 others in developmental centers.

My view of institutions is that they are obsolete. Everyone can benefit from living as normal a life as possible in the community, whether they live at home with their families or in smaller groups homes rather than large institutions.

My view is the opposite of Mr. and Mrs. Gold’s. Just because a child is low functioning or has a medical problem does not mean he/she should be living in an institution. I kept my low functioning (6 month mental age), non-verbal, non-ambulatory child at home for 30 years. During those 30 years his health was perfect except for one ER visit the first time he had asthma. He now lives in a group home with five other residents. His health continues to be very good. His provider agency caters to the more involved population. My son had top-notch medical care from doctors and specialists of our choice, in the community, to meet his special needs and not the one-size-fits-all he would receive in an institutional setting.

For 30 years I never felt the need for my son to be institutionalized—no matter how much work it took on my part at home. However, when the time came and I could no longer do the work, a group home, which is the more natural home-like setting was, and is, the best place for him. If you check the studies and federal reports there is much less abuse, neglect, illness and death in group homes than there is in institutions. Institutions should be abolished. It is repugnant to me that 200 people are imprisoning more than 1,500 others. Even the hardest to place deserve the same rights as everyone else, especially to live in the community.

Contrary to what Mrs. Gold speaks of we do not have a turnover problem in our group home. Many of the original people still work there. Although, I do not think having the same people performing the same work for years and years is always beneficial. I feel when workers stay too long in the same position they get burned out. Also, residents suffer from “hostage syndrome” when they depend on the same person or persons for their lives.

I just received a copy of your People and Families magazine and thoroughly enjoyed reading it! How powerful hearing the stories of the folks 10 years after leaving the institution.

Just a note to tell you how much I enjoy your magazine. They say it takes a "village" to raise a child—and it sure does when dealing with any disability.

The reason I enjoy your magazine so much being the mother of a woman with severe disabilities is it is not often just a glowing report of all of the villages but the truth from the people who have lived in them.

I really appreciate your magazine as my daughter is 38, non-verbal and has a chronic seizure disorder and seizures daily.

As I age, I worry about the choices for her and the choices I would have to eventually make for her. Your magazine is giving me an honest look at the choices that are available from the clients who are living them. That I hope will give me a better feel for what's out there, since as parents, we're not always aware of. I wonder what is available for individuals who are more medically needy....but I am sure my knowledge base will increase with each and every issue of your magazine.

When William Hein – age 5 – is driven past the TumbleJam Children’s Activity Center in Scotch Plains his eyes light up.

The autistic boy has limited verbal skills, but has no trouble expressing his feelings about the day camp “Leaps and Bounds,” housed each summer at the TumbleJam Center.

He yells “TumbleJam” spontaneously during car rides and shouts “yeah!” when his mother pulls off the highway into Scotch Plains.

Hein is one of many New Jersey children who attend a summer camp designed for children with autism. Activity schedules vary from camp to camp, but the programs share a similar goal: To offer the same structured, nurturing environment that autistic children receive in school, but during the summer months.

Most autistic children receiving special education services in the public schools have an extended 11-month school year. Having one month away from school might not sound like much, but to children who thrive on structure, a few weeks of television and unsupervised free time could erode months of behavioral progress, experts say.

“A lot of kids are in a very structured routine in school, and when they have breaks in the school year, a break in that routine, you end up with behavior issues,” said Scott Matthews, executive director of the non-profit organization Intensive Therapeutics, Inc. in Scotch Plains, which operates Leaps and Bounds.

Autism is a developmental disorder that typically forms within the first three years of a person’s life. The disability impairs communication skills and makes it difficult to distinguish relevant information from irrelevant information. Socially, children with autism may lack awareness of others and have severe anxiety around people, to the point where they would rather play alone than play with other children.

Children with autism will often not be able to make eye contact or smile socially and will have trouble following simple verbal commands. They tend to focus on detail and ignore larger concepts that put those details into perspective, according to developmental disorder experts.

A report issued by the Centers for Disease Control and Prevention in February shows New Jersey has one of the highest rates, if not the highest rate, of autism in the country. But fortunately, the Garden State also offers parents some of the most innovative options for their autistic children during the summer.

In 2004, Matthews created Leaps and Bounds specifically for those short breaks in the school year. He spoke with parents of autistic children regularly in his capacity at Intensive Therapeutics and learned many of them were struggling to find appropriate activities for their children during the summer.

“There’s a missing piece in the puzzle of treating kids with autism,” Matthews said. “That’s where we come in.”

The curriculum at Leaps and Bounds mimics a typical school day for children with autism.

“Kids with autism have trouble with transitions – moving from one activity to another,” Matthews said. “When things change, it’s difficult for them to transition, for example, to go from a simple activity like sitting at a table to singing a song. School is very structured, and they know what to expect.”

Linda Oliva of Kenilworth chose Camp Leaps and Bounds for her son, Kyle, 6, for the first time last summer because she noticed he regressed significantly during his five-week summer break.

“No matter how hard I try at home I cannot give Kyle the same structure that he has at school, because it isn’t school,” said Oliva, who also has another son, Jason, 7.

Parents such as Oliva get frustrated because they cannot provide the necessary structure and constant stimulation required to keep their autistic children focused. Jobs and routine tasks, such as shopping, caring for other children and doing housework, put too many other demands on parents’ time.

“Within three weeks of the summer break, Kyle was unfocused,” Oliva said. “He didn’t keep up his skills and behavior issues were coming back. There was a complete regression in skills and behaviors.”

Kyle would gravitate away from his lessons and toward the television all summer if Oliva didn’t keep him focused constantly. When Kyle entered the camp, his mother noticed a stark improvement.

This year, Kyle will work on playing games with other children and on developing the upper-body strength necessary for small tasks, such as writing or using a fork, Oliva said.

“Camp Leaps and Bounds is not a camp like traditional summer camps because it is still very structured like their school day, but the kids do have a lot of fun,” Matthews said. “Many parents say their children need the continuity of the therapy. I heard story after story and put the camp together based on the parents’ needs.”

Some parents put their autistic kids in soccer camps or other traditional recreational camps, hoping they will participate. But autistic children have trouble in social situations, and they may also have low muscle tone and exhibit self-injurious behavior.

“That’s the frustration that most of the parents talk about – that in other camps, like soccer, the child may not participate much,” Matthews said. “The camp may not have the staff and structure to help the autistic child participate. Leaps and Bounds is different than other programs, and that’s why we put the camp in a children’s activity center.”

There is something light-hearted about Camp Leaps and Bounds, with its friendly instructors and playful atmosphere. But each activity and interaction a child participates in reinforces a lesson.

“The camp is fun, but we are focusing on specific things and individual goals for each child,” Matthew said. “When they come in, we show them how to take their shoes off and where to put the shoes. There’s a welcome circle or music time, and we go to each child and say ‘hello,’ introducing a social component, making sure they know the staff by name and each other by name.”

A typical day for the campers includes arts and crafts activities, sing-a-longs and time set aside for game playing. Students work on feeding skills and communication skills during snack time by learning how to eat properly, how to ask for more and which utensils to use. Activities such as the camp’s obstacle course encourage students to develop gross motor skills and learn how to follow directions.

When it comes time to play games, the children work on a lot more than just winning, Matthews said.

“During game time, the larger group is broken up into smaller groups of three or four children,” Matthews said. “We work on how to set up a particular game, taking turns, waiting for your turn, eye contact, verbal skills such as saying `my turn,’ breaking down the rules of the game, sitting and putting the game away. Occasionally we will work on the emotional component of playing a game, such as what happens when you lose.”

Students wrap up the day with a trip to the “goodbye circle.” Staff members point out the positive things the children accomplished during the day before leading them in the “goodbye song.” Putting shoes and jackets back on is the last ritual of the day.

Parents are given a log of all the activities their children participated in that day and how they responded. The log is a tool for the parents who want to follow up on each day’s lesson.

“It’s so they can have a conversation knowing what and how their child did during each activity,” Matthews said.

Camp Merry Heart in Hackettstown, N.J., founded in 1954, takes a different approach to helping children with autism. It is an integrated camp, for children with and without autism.

Events at the week-long sleepover camp are rigidly structured, but they are designed with fun in mind. Boasting such activities as kayaking and paintball shooting, the itinerary resembles that of a traditional summer camp.

Campers wake up at 8 a.m. at Camp Merry Heart and attend a flag raising ceremony. After breakfast, the children go boating, play games and participate in a variety of other activities that vary from day-to-day. Campers then spend the afternoon at the pool. After dinner and a shower, the staff holds special events.

This summer’s evening activities will include theme dances, talent shows and boat races with cardboard boats the children build themselves, said Alex Humanick, the camp’s assistant vice president.

If one activity symbolizes the spirit of Camp Merry Heart it would be the obstacle course. Campers and staff members casually refer to it as the “challenge course” and its full title is the “challenge by choice course.” Campers are encouraged to take on the course, but those who don’t want to feel no pressure to do so.

Camp Merry Heart serves 75 children per week for 12 weeks each summer, but only about 20 percent of those children have autism, Humanick said. Parents are welcome to call any time to check on their child. Staff members are intimately acquainted with each child and are readily available if a parent should call.

“We really promote individualized services here. We plan out each child’s care with a parent and let them get to know our camp,” Humanick said. “Parents are welcome to call so they always have an idea of how their child is doing. In fact, sometimes we call them for advice on feeding their child or otherwise dealing with them. There’s a good line of communication we keep open.”

Alev Erdi founded Spectra Academy this year to promote improved social skills for children with autism. She will try to foster a social atmosphere in her Montclair-based camp through the disciplines of art and drama. A speech therapist will work with students during the camp to try to help them improve their communication skills.

“Our children yearn for acceptance, to belong and be useful, functioning members of society, but they do not know how to,” Erdi said. “These children can learn the necessary social skills if taught systematically. Our goal is to teach these skills one at a time and help them generalize it by having typical age peer models in the group.”

Campers at Spectra Academy study either art or drama in the morning and take a short field trip every afternoon. Outings to restaurants and local stores encourage children to practice their social skills in a real world setting, Erdi said. Each day ends with a wrap-up, where instructors offer positive reinforcement to children who were well-behaved.

Camps like Spectra Academy, Leaps and Bounds and Camp Merry Heart have evolved from the emerging professional field of recreational therapy. Recreational therapists work with people of all ages, most of whom either have injuries or more permanent disabilities, to promote emotional, mental and physical well-being through sports, games and other forms of entertainment.

Their work with autistic children is emerging and can play a primary role in enhancing a child’s quality of life, according to the American Therapeutic Recreation Association (ATRA).

Recreational therapists offer individuals with disabilities the opportunity to resume normal life activities and to establish skills for successful social integration, according to the ATRA. Occupational therapists help significantly with the child’s gross and fine motor skills and self-help skills, the ATRA said.

The number of camps that deal exclusively with children who have developmental disabilities has grown nearly ten-fold over the last 20 years, according to Steve DeLuca, assistant to the assistant division director of the New Jersey Division of Developmental Disabilities (DDD).

The camps are not all regulated by the state, but most of those camps are accredited by the American Camp Association and are run out of state-regulated facilities. The camps are primarily day camps, but a few, such as Camp Merry Heart, offer an overnight component.

“Whereas there were two or three options available when I started, we have seen growth to about 20 different options for families and individuals with developmental disabilities, including those with autism,” said DeLuca, who joined the division in 1986.

DeLuca agrees with camp directors that summer camps play an important role in the treatment of a child with autism.

“Camps are very central to the therapy of an individual with autism, because keeping them structured is keeping them happy,” DeLuca said. “Basically, they give families a break during the day and they keep the individual with autism occupied in a positive way.”

Camps such as Spectra Academy even offer themed curriculums; parents don’t have to choose between a form of recreation they feel their child would enjoy and a camp that’s appropriate for their child’s needs. Being an “autism camp” is no longer an adequate way to describe many of the educational and recreational camps.

“Our program is unique in that it is providing social skills training programs with recreational activities,” Erdi said. “In other words, we are not providing a summer camp where autistic children are accommodated. We are providing a social skills training camp where recreational activities are vehicles to teach.”

Families looking for an accredited summer camp appropriate for their children can log on to www.acacampsnj.org. By clicking the “find a camp” button, parents can choose a camp based on location, activity, cost and special needs.

When Kenneth Ritchey graduated from Shippensburg University in Pennsylvania with a teaching degree, his first job was working with students with disabilities.

“I spent seven years in Pennsylvania as a classroom teacher and a supervisor for students with special needs,” recalled Ritchey, 59. “It’s a career I’ve never left. It’s been 37 years.”

In his latest service to people with disabilities, Ritchey took over March 7 as Assistant Commissioner of the state Department of Human Services (DHS), Division of Developmental Disabilities (DDD).

He now oversees a state division that provides services to almost 37,500 people with developmental disabilities, with a budget appropriation of $1.3 billion for fiscal year 2007 and almost 9,000 full-time staff members. He leads a team operating seven developmental centers and contracts for a variety of community services including group homes, supervised apartments, activity and employment programs, and support services to families.

“I see working in this position as a great challenge,” Ritchey said. “I look forward to working with people throughout the division, which has a great caliber of staff, departments, providers and families.”

Ritchey sees himself as ideally positioned for the $126,000-a-year job. Besides spending a lengthy career serving people with disabilities, his own daughter, Erin, had developmental disabilities. She was killed in 1988 in an auto accident at age 7 ½.

His wife, Nancy, provided job placement services in the Dayton public schools for children with disabilities. Her father worked at several institutions in Pennsylvania, in which Nancy lived on the grounds.

“You can say Nancy and I both have a strong interest and background working with people with disabilities,” said Ritchey, who is also well-known for his feverish support of the Washington Redskins, whose football stadium is 172 miles away from Trenton, just a three-hour drive.

Ritchey said he looks forward to implementing the DDD’s Olmstead plan, which is 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.

“I embrace the philosophy of Olmstead, which started in New Jersey before I got here,” Ritchey said. “I still see a role for institutions, but smaller and more focused. I see living in the community as a wonderful opportunity. We need to set out a vision and hope people will buy into it.”

Ritchey came from Ohio, where he served as director of the Ohio Department of Mental Retardation and Developmental Disabilities (MR/DD) since Feb. 11, 1999. In that role, Ritchey directly reported to the Governor and oversaw a human service agency that provides funding, oversight and technical assistance to Ohio’s 88 county boards of MR/DD.

The Ohio department includes nine divisions, 3,700 employees and a budget of $1.1 billion. More than 74,000 Ohioans receive services and supports through the state’s system.

Major initiatives under Ritchey's leadership included a restructuring of the department and the expansion of Ohio's Self-Determination Project, in which consumers choose the types of services they want and need. Ritchey is proud to note he developed many interagency agreements and navigated the settlement of three class action lawsuits.

As one of his last acts as Ohio’s director, Ritchey created policy that will ultimately allow 1,500 Ohioans living in government facilities to move into community settings, according to Michael Kirkman, who is executive director of the Ohio Legal Rights Service. The 1,500 waiver opportunities will allow Ohio to match federal dollars so more people with developmental disabilities can live outside of the institutions.

“Shifting away from institutions is the trend everywhere now, but it was happening slowly in Ohio and Ken made sure it was going to happen,” Kirkman said.

Kirkman noted that Ritchey inherited budget problems and other difficulties from his predecessor, but did “the most he could” with the dollars available. Ritchey created a reporting and investigation system, in conjunction with former Ohio Gov. Robert Taft, for allegations of molestation and abuse. It is now considered a paradigm for the federal government.

“I am very proud that we established an abuser registry, a state law that banned certain people from employment if they abused, neglected or exploited people with disabilities,” Ritchey said.

The federal Government Accounting Office came to Ohio earlier this year to observe the system, Kirkman noted.

“Ken was a breath of fresh air in an otherwise stolid administration,” Kirkman said. “Within the confines of a constrictive budget, he was able to come up with some creative solutions to assist people with disabilities.”

Kirkman noted Ritchey could have worked harder to close institutions that were quickly becoming outdated and no longer served the needs of consumers. He acknowledged political conditions made it difficult for Ritchey to close many of them, but he still believes more could have been done.

Dan Ohler, who serves as executive director of the Ohio Association of County Boards of MRDD, said Ritchey’s ability to do what was best for Ohio’s citizens with developmental disabilities was exceptional, even in the face of political pressure.

“The system in Ohio seems like it’s always in a constant state of flux,” Ohler said. “I always thought Ken Ritchey did a good job of taking politics out of the equation and focusing on providing services for our most vulnerable citizens. He did as good a job as anyone can reasonably expect to do.”

Ritchey’s faults – he wasn’t much of a public speaker – were minor and he could always be reasoned with, Ohler said. If you objected to his decision, he would at least listen to your side of the issue.

“I know there were times when he took a position I didn’t like, but I always knew I would get a fair opportunity to present my side of the argument,” Ohler said. “He could have just said ‘I’m the director and that’s my decision,’ but he didn’t do that. He would always hear me out. Sometimes he would change his mind and sometimes he wouldn’t. So even when I would disagree with him, I actually gained more respect for him and the way he handled his decision making.”

Following a change in the governor’s office in Ohio, Ritchey left the position and looked for a similar challenge – bringing him to the Garden State.

“Kenneth Ritchey helped redesign Ohio's large Medicaid system for people with disabilities with a focus on the health and safety of consumers,” said New Jersey DHS Acting Commissioner Jennifer Velez. “His vast experience will be a valuable asset to New Jersey.

“Our goal will be to continue expanding the available options in services that meet the needs of consumers and families while fully utilizing federal funding opportunities,” Velez added.

David Zwyer, executive director of the Ohio Developmental Disabilities Council, said he has “the utmost respect” for Ritchey, noting he always opted for the “road of collaboration and support” with the council.

“You always had access to Ken,” Zwyer said. “He always found the time to talk with you.”

Zwyer noted Ritchey has been a large supporter of the arts for people with disabilities, noting an art program in Montgomery County, Ohio is dedicated in the memory of Erin Ritchey. “Ken was active in all area of the arts, from ceramics, to watercolors, to photography,” Zwyer said. “He even brought the art into the department offices to show it off.”

Ritchey has a graduate degree from the Curry School of Education, University of Virginia. He has a second Master's in Education Administration from the University of Dayton and participated in the Program for Senior Executives in State and Local Government sponsored by the John F. Kennedy School of Government at Harvard University.

Twenty-five years ago, Linda Westover’s husband died, leaving her with four young children to raise alone. Two of those children, Jason and Cindy, have developmental disabilities.

Westover lives in Manahawkin with Jason, 27 and Cindy, 24. Her older daughter and son now live on their own.

Life has been difficult for Westover. Cindy, who is verbal and ambulatory, is legally blind, has bipolar disorder, a neurological impairment and ADHD. She has trouble controlling her emotions. Jason has autism.

According to Westover, Jason is the more easy going of the two. He went to public school until seventh grade and transferred to a special education school until he was 21. Through DDD, she purchased a computer and programs to help him with reading and other academics. He had an aide in the class and did well, graduating at a sixth grade reading level.

Cindy went through nine schools because of her disability and behaviors. She graduated at a third grade reading level. Westover said she began exhibiting a temperamental behavior around age 10 or 11. “The first time she saw her in a restraining jacket, I was in shock. I didn’t believe that this was my daughter with six people holding her down at school. She struggles because she wants to learn and she needs to keep going over things. It’s frustrating for her. Jason could read much better than Cindy could, so she was jealous. She is older, so she wanted to be smarter than him.”

Cindy finished school first, and Westover tried several day programs for her. “I exhausted every avenue—adult day care, workshops, recreational programs, jobs—but nothing worked. Cindy’s behaviors made it difficult for her to stay in a program. She would run off, bite and kick.”

Already frazzled, Westover had no idea what she would do when Jason graduated two years later. Westover works full time to support her family, driving a school bus and working as a lunch aide at a public school. She feared that she’d have to quit her job.

“I love my job. I do the bus run with the handicapped kids on it. I feel I have something to offer them and I won’t be quick to judge them. I treat them as nicely as I treat my kids.

“I was so afraid that I’d have to stay home when Jason graduated. I worked very hard to get my children through school and I didn’t know what to do when they graduated. I had worked at the school for 17 years at that point. I didn’t want to quit my job and lose my pension. I had always worked two or three jobs. I didn’t want to go on welfare, but that was all that anyone offered to me. I couldn’t pay anyone to take care of my children full-time. I already had to take a cleaning job just to pay someone to put them on the bus in the morning.

“I didn’t know how I could leave my children alone all day, but I had no other choice. It was so exhausting. When I got home from work, the kids were raring to go. I’d be up until 3 AM with them and then have to get up at 5:30 AM to go to work. I was so burned out.”

During that time, Jason and Cindy would sleep until 1 PM, when Westover would wake them on her lunch break and cook breakfast. After work, she’d make another meal, clean and drive her children to programs. “I took them to a cooking class and social club, so they could be with kids like themselves. I was so tired that I would sleep in the car in the parking lot.”

Life changed when Westover learned about Real Life Choices. “I went to the meeting, but was skeptical. Nothing had worked out before. I brought them with me to show how hard it was for me. They told me they didn’t know how I did it. They said they wanted to help me. It surprised me! I thought nobody would do anything for me.”

Through her Real Life Choices budget, Westover hired someone to care for the children. “The first person didn’t work out. She wouldn’t work the full hours and she’d bribe the children to say that she had been there.

“While driving the bus, I met a nanny who worked for a teacher. She was putting the teacher’s children on the bus. She’s looked like she’d be a perfect nanny. I invited her over to meet my children. She was hooked on Cindy. They liked each other immediately. We hired Carleen Bosner, who is firm, but loving.”

Westover’s life seemed to be getting easier, until physicians diagnosed her with breast cancer two months after hiring Carleen. Following surgery, she was in pain, exhausted and sick from chemotherapy. “Since Carleen had just started the job, I was so worried that she might quit. I thought it might be too much for her. Carleen said she couldn’t do that to me because she had bonded with our family already.

“Carleen was there 12 hours a day when I was sick. Real Life Choices provided the extra hours. Although it was a very hard time, having Carleen made it possible to survive. If I hadn’t had Real Life Choices, I’d have probably had to put the children in group homes. A psychiatrist asked if I needed help placing them. It was a scary thought. I knew Cindy would run off and Jason would have been upset.”

While Westover was ill, Carleen cooked breakfast, lunch and dinner for the children each day and did laundry for the entire family. She cleaned the entire house and did grocery shopping. “What would my life have been like if I didn’t have Real Life Choices?”

Since Westover recovered and resumed working, Carleen works 35 hours each week. She prepares the children’s breakfast each morning, helping Jason and Cindy make healthy food choices. This is especially important for Cindy, who has diabetes. Carleen sets out clothes and towels and directs them to shower each morning. She takes them to doctor and dentist visits and drives them to their jobs.

Cindy works at a Habitat for Humanity store each Tuesday dusting the furniture, stacking the books and arranging children’s toys. The employees interact well with her. She likes the customers and enjoys drawing pictures for them.

Jason works Thursdays and Fridays at McDonald’s wiping tables, sweeping and mopping the floor. On Thursdays, Carleen helps Cindy clean her room and her bathroom. On Fridays, she takes Cindy for a manicure or out shopping. “Jason dislikes shopping, so they do that when he is at work.”

On the days the children are together with Carleen, she takes them into the community, to the library, to play miniature golf, to indoor arcades, to amusement parks or to the movies. “I think my kids have seen every animated movie out there.”

Carleen also takes them to their evening program, so Westover no longer has to sleep in the car. “I just go pick them up.”

Cindy’s behaviors have changed for the better since Real Life Choices. “Her hygiene is better, since she takes a shower for Carleen. She does the chores that Carleen tells her to do. She spends the day doing things in the community instead of sleeping. She is much happier. The bad behaviors don’t come anywhere as often as before.

“Carleen gives her the attention she needs. Carleen includes Cindy in her family, taking her to dinner once a week with her own mother, sister and her sister’s children. She takes Cindy to her sister’s home, where she plays with Carleen’s nieces. They remind her of her behaviors and treat her like family, always making her feel welcome.”

Carleen takes Jason to play skee ball and out to lunch when Cindy works at Habitat. His skills have improved from his involvement in Real Life Choices. “Jason used to only say ten words a day, but he talks regularly now. He always talks to Carleen. He used to write the things he was angry about on a piece of paper. Now, he comes and tells me. The job has also helped his self-esteem. He feels better about himself. Carleen makes sure he’s dressed properly for work. She makes sure he gets to work on time. She reminds him to brush his teeth and shave with his electric razor. Jason gets along very well with her.”

Westover can’t say enough about her children’s nanny. “Carleen is a wonderful person. She has driven an hour to the Cape May Zoo when they wanted to have a picnic. She has driven an hour to Atlantic City so they could put a roll of quarters into the machine and walk on the boardwalk.”

I don’t have to worry about whether they ate breakfast or lunch. I sit at the table and eat dinner with them now. When they go to their evening program twice a week, I can watch TV and rest. I go to bed at 10 PM instead of 3 AM. The kids are worn out from being busy all day, so they go to sleep easily now.

“I can achieve my goal of working and eventually retiring because of Real Life Choices. I never wanted to live off the system and I still don’t. I can retire with a pension in ten or twelve years. I can see my dream coming true for me. I can see everything I worked for coming out the way I want it to.

Dr. Purnima Hernandez talks so quickly, she can hardly get the words out fast enough. Ideas seem to pour out with such fervor; they come like a white rapids waterfall. The effervescent pediatric dentist is on a mission. She hopes to change the direction of dentistry for children with disabilities, and she is living her mission every day in Northern New Jersey.

Dr. Hernandez has a unique perspective that many dentists do not have. Her own son Naryan was born premature and has autism as well as other health issues. So she has personal insight into the challenges parents who have a child with a developmental disability face.

“After I had my child, I took five years off to learn how to take care of him,” Dr. Hernandez said. “When I returned to my practice, my passion and approach to dentistry had changed.”

Dr. Hernandez has two successful pediatric dental practices. Her private practice in Fair Lawn, NJ offers a spa like environment for all children including those with disabilities. One day a week, she treats children at a clinic as part of the Craniofacial team at St. Joseph’s Hospital Medical Center in Paterson, NJ where most of her patients receive care through Medicaid and Charity Care programs.

“I provide the same level of care in both my practices,” Dr. Hernandez stated emphatically. She points out that this is not always the case. “I have observed that for children in need of dental care, if you have the money you get the services right away. If you don’t have the money, you have to wait. As a result, many children end up with treatment that is of an emergency nature such as an abscess.”

Even at St. Joseph’s children have to wait three to four months for an appointment.

“When people consider the barriers to dental care for children with developmental disabilities, they often think of the physical constraints, such as wheelchairs and access to the equipment,” Hernandez said. “But parents will do so much to assist, such as carry their child into the chair or even hold their children during treatment, so these are not the major barriers in pediatric dentistry.”

The real barriers according to Dr. Hernandez are financial, lack of knowledge on the part of providers and parents, and time constraints.

“An exam on a child with a disability, especially one who has behavioral issues takes an enormous amount of time and energy, which is not a financially lucrative process,” Dr. Hernandez explained. “To teach a child with a disability to sit and open their mouth, for example, will take a lot of time.”

And according to Dr. Hernandez, commercial health insurance plans don’t reimburse for this extra time. As a result, many children go untreated or the level of care they receive is not adequate.

“There are many pediatric dentists, but I think that it is by default that we become special needs dentists.” Dr. Hernandez said. “Many dental students are interested in serving children with special needs, but they are not taught how to best treat this population. The dental school curriculum needs to be changed so that more dentists will feel comfortable treating people who have disabilities.”

Dr. Hernandez’ unorthodox approach also enlists parents in the process as part of the team.

“The parent has to be educated and that is primary,” Dr. Hernandez explained. “My secondary focus is for the child to start learning to accept dentistry in a dental chair.”

Dr. Hernandez teaches her patients by breaking down specific skills such brushing their teeth into smaller steps.

One strategy is to pre-teach skills to parents at home, prior to coming in for the dental examination. In preparation for the first visit, Dr. Hernandez calls parents to learn about their children—their likes, dislikes and their current level of dental health practices.

For example, if she learns that the child likes “Barney,” she will plan on incorporating the television character as part of the visit. She will offer instructions to the parent on how a child can start opening their mouth. She follows up immediately by e-mail describing what to expect during the first visit, including photographs of the office.

“Because of my own experience raising a child with special needs, I have learned that children are capable of learning or understanding more than we think they do. I start where the child is and then move to the next level. They learn how to toilet and button their shirt. Dentistry is much easier than that.”

Dr. Hernandez believes that with repeated exposure, most children with disabilities are capable of accepting dentistry with minimal trauma like every child of their age group.

“When children are fist diagnosed, parents are young and overwhelmed. Medical and survival issues become primary and dental issues go on the back burner. By the time they start thinking of the dentist, the child may have many cavities. It is really important for parents to remember that oral health care is primary and necessary for overall health care.”

Unfortunately, Dr. Hernandez sees many children in her practice that already have a lot of decay, by the time they come in for treatment. She suggests that all children have their first dental visit in their first year, the current recommendation of the American Academy of Pediatric Dentistry

Dr. Hillel Ephros, chairman of the Department of Dentistry and Medical Director of the Regional Craniofacial Center at St. Joseph’s, works on the team with Dr. Hernandez.

“Dr. Hernandez is very patient and very much in tune with this population which puts her in a

an excellent position to do things that other providers won’t do,” Dr. Ephros said. “She works tirelessly and we are committed to allowing her to take the time to do it.”

It was at St Joseph’s where Dr. Hernandez first began to see how her knowledge in sensory integration helped the children she was treating.

“Many pediatric dentists do not recognize that dentistry is a very sensory experience. If you have sensitivities to sound, smell or light, you are not going to feel good at the dentist.” Hernandez explained.

Touch for a child with sensory dysfunction can be perceived as pain, she explained. The mouth is sensitive for all children, but even more so for a child with a disability.

“You have to be a detective and find out what it is that they like and dislike. My goal is to reduce their level of anxiety and heighten their learning potential. ”

Dr. Hernandez keeps sensory stimulation at a minimum compared with other dental offices. For example, she will introduce the sound of an instrument, to a child in a very gentle way.

“Even children with significant behavioral disabilities, have been able to learn,” Dr. Hernandez said. “Once you establish trust you are able to do a lot more. It is almost a different belief system. And you can see that through the successes we have achieved with the parents who put in a lot of effort.”

“Most parents have a high level of anxiety when they take their child to a dentist,” Hernandez explained. “When I tell them that that I have a child with a special need the conversation goes immediately to a different level and their anxiety is reduced.”

Michele Kielselstein is one of the parents who found Dr. Hernandez. She commutes all the way from Albany, New York for treatment for her fourteen-year-old son Aaron who has autism. The Kielselstein’s, who were referred to Dr Hernandez through the consultant they work with at the Carbone Clinic in Nyack, were pleasantly surprised when Dr. Hernandez called them personally to learn more about Aaron in preparation for the visit.

They told her that Aaron enjoys the movie Annie, holding straws and sprite soda. Dr. Hernandez suggested that they bring these along. She also suggested they purchase some dental picks at a drugstore and tap his teeth with them while he is lying down a couple of times a day. Finally, she asked them to purchase a battery operated toothbrush and start using it to get him acquainted with the vibration.

During the initial visit, Dr. Hernandez sat in the waiting room and started to play with Aaron. Then she took him into a little room with a TV, desk and chair. Eventually they moved into the room with a dental chair where there was a big flatscreen TV.

Dr. Hernandez talked to Aaron while she worked. He was in the chair for an hour and a half, watching Annie while she cleaned his teeth, treated them with fluoride and even applied sealants. When two cavities were found, she gave his mother instructions to prepare for the next visit and a nose mask used for administering oxide for Aaron to take home so that he could get acquainted with the smell of it. She also suggested that Aaron’s parent’s place numbing medication on his gums to get him used to the feeling of numbness in case she needed to use a local anesthetic during the procedure.

“The only way I thought my son would ever have dental treatment was in the operating room,” said Kielselstein. “In the past he has always been sedated, which was so scary because of the risk of anesthesia. As a result, I didn’t rush to take him to the dentist.

“I have met a lot of people who are affected by autism. One of the biggest hurdles we go through as parents is to find a good dentist. Aaron looks forward to going to the dentist now. I would travel a million miles to get to her.”

Claude and Daniel Winn had put off taking their six year old daughter Maya to the dentist, fearing that it would be traumatic for her. Maya has Pervasive Developmental Disorder. Pressing medical and therapy issues always felt like a priority over her dental care. But when she started experiencing difficulty sleeping and started grabbing at a sore on the side of her mouth, the Winn’s suspected that something was going on with her teeth, and decided to take her to the dentist.

Prior to seeing Dr. Hernandez they took her to another pediatric dentist that turned out to be a trying experience in which they ended up pinning her down in order to examine her. The dentist diagnosed significant problems, which would require extracting some teeth and recommended that the treatment be done in an operating room under sedation.

“We had been brushing Maya’s teeth regularly but it was always an ordeal,” said Claude. “Because of her sensory issues, having her teeth brushed felt very invasive to her and she would cry.”

The Winn’s decided to seek a second opinion and sought the advice of the consultant on Maya’s team who referred them to Dr. Hernandez.

“Dr. Hernandez was willing to see us right away and was so compassionate on the telephone,” Claude said. “She sent us a book to read to Maya explaining the whole visit including where we will park and a description of the elevator we will ride. When we got to her office it was so nice to see it so tastefully decorated and filled with sensory pleasing items like a turtle beanbag chair and a Zen clock. She spent over an hour with us just talking.”

Although ultimately, Dr Hernandez also felt Maya should be treated in an operating room, the procedure went very well and they even used pictures of Maya to create a book about having surgery to present to other children in her practice. The Winns are feeling so relieved these days since she is now on board with regular dental visits.

“Our goal is help Maya learn how to tolerate traditional dental visits where she will sit in a dental chair,” Claude said. “Dr. Hernandez is an extraordinary human being who vibrates at a different level.”

Dr. Hernandez says it is unfortunate that many children with disabilities, especially those with behavioral issues, are given few learning opportunities and hence will require treatment in an operating room. She believes that with proper desensitization procedures, many children can receive care in the dental office.

“I have learned how to be a special needs dentist, but I feel I have not learned enough,” Dr Hernandez said. Even so, she has given birth to a new era in pediatric dentistry through thinking way outside the box. And she doesn’t seem to be running out steam any time soon.

“Right now my level of energy is so high that I don’t have enough hours in the week. And every day is such a great day.”

Greg Mizanin, communications specialist and graphic designer for the Council for 21 years, died over the July 4^th holiday of natural causes.

Greg was a professional and emotional anchor for the office. He often crossed over from his regular duties—which included creating everything related to the “look” of the Council and all its projects—to help everyone with just about anything else they needed as well. We all use to joke about it, quoting a well-known section of state upper-management employment guidelines—“And other duties as required.”

Either way, required or not, Greg would step in with unassuming grace and goodwill.

Greg came to work at the Council in April of 1986. He began the Council’s long record of quality publications with the launching of Interface. In 1989, he received a Communications Award from the National Easter Seal Society and the American Association of Disability Communicators and honored during a ceremony at “Tavern on the Green” in Central Park. He then spearheaded the Council’s own awards to new organizations for the coverage of disability issues, enlisting the help of CBS newscaster Bree Walker as emcee of the event.

Throughout a transition Greg picked up the mantle of the Council’s resources and referral efforts, publishing an essential guide to disability agencies and services, which became the Resources Guide now published by the state Division of Disability Services.

From the mid-1990’s, Greg was the “go to” guy here at the Council for layout & design of conference brochures, signs, programs, events, newsletters, the Council table display, annual reports, certificates, convention banners, etc. We would give him basic text and ideas of what was needed and ask Greg to “work his magic.” The end products would always surpass our vision. Greg edited the Council's newsletter, was our back-up photographer and our web master. And, of course, he designed the magazines “People with Disabilities” and “Families,” and created the new look when those were combined into one publication—“People & Families.”

For many of us, however, some of our fondest memories of Greg will be as the office’s informal morale officer. Without any fanfare or any hint of self-congratulatory smugness, Greg organized sports and Oscar pools, trivia contests and the now legendary “Wing Bowl.” A major sports and movie fan, Greg’s graphically fun selections sheets would appear in our mailboxes in advance of the Superbowl, the NCAA basketball tournament, the Oscars and etc. Then we would know “the games were afoot.”

And each month we eagerly awaited the new assignment calendars he created. Last September that tradition peaked with an all Seinfeld theme calendar—complete with Master of Your Domain Day, No Soup for You Day and, the piece de resistance, Last Day of the Summer of George (on the last day of summer, of course). All embellished with photos from the show.

Greg will be missed by all who knew him. While he can never be replaced we will do our best to carry on here at the Council, doing the worked he loved and supported so well.

The New Jersey Family Support Act led to the creation of nine Family Support Planning Councils that provide valuable information about services and supports to families caring for loved ones with developmental disabilities. Family Support Councils also Gather Information, Monitor services, and Make Recommendations to the NJ Division on Developmental Disabilities (DDD) about needed programs and funding.

Family Support Planning Councils form a partnership with DDD to make sure that services and supports are consistent with needs identified by families in the region. Beginning in 1989, organizations assisting people with disabilities began to understand the importance of providing support to families caring for individuals at home. Family support began with respite programs and grew to include other activities following the passage of the Family Support Act in 1993. This Act created the regional councils and established the NJ Council on Developmental Disabilities as the agency to coordinate council activities throughout the State. The Act assured families a role in planning the State’s service delivery system. Councils continue to work to create the best possible services and supports for families and people with disabilities in New Jersey.

Establishes in the Division of Developmental Disabilities a system of Family Support designed to strengthen and promote families who provide care within the family home for a family member with a developmental disability.

All individuals have the right to belong to a family unit where enduring relationships can be fostered.

Families are the major providers of support, care, and training for their family member with a developmental disability; and are continually searching for ways to support their relative instead of placing them outside the home.

Failure to provide needed supports can result in premature placement in a setting outside the home.

To be effective, family support must: support the entire family; be easily accessible; be flexible; be culturally sensitive and individualized.

Families themselves are able to define their own needs and select their own services.

Family supports must be chosen by families, controlled by families and monitored by families.

New Jersey’s family support coordinator is Monique Wilson: 609.341.3112 monique.wilson@njddc.org

For more information visit the New Jersey Council on Developmental Disabilities’ web site at: www.njcdd.org , click on the link for Family Support. For more information about the Regional Family Support Planning Council in your area click on the corresponding section on the map found at the web site.

While support networks for parents of children with disabilities are commonplace throughout New Jersey, a pair of Linden parents are taking grassroots advocacy to a whole new level.

Tirrell Martin and Joann Fruciano, co-founders of the Linden Educational Association for Parents and Professionals (LEAPP), have expanded their local support network to incorporate parents of children without disabilities, as well as regular and special education teachers, school administrators and the community at-large.

From their meeting room in a former library in Linden, LEAPP is now gaining steam, even attracting people from outside the city who are eager to learn new and better ways to educate children with disabilities.

“It’s so important to have interaction between parents of students in regular education and in special education,” says Fruciano, whose 15-year-old son, John, has autism and attends Soehl Middle School. “For many years, it has seemed that I’m on this side of the fence and you’re on that side of the fence. But the fact is that our children all go to the same school.”

Thomas Nappa, director of pupil personnel services for the Linden schools, says LEAPP is designed to combine the needs of general education students with those of students with disabilities. Yet, in many circles, it is still regarded as the Parent Teacher Association (PTA) for children with special needs.

“You have PTAs in all of our buildings; parents tend to believe that is their organization,” Nappa says. “It is our hope LEAPP will emerge into a parents’ advisory committee comprising both general education and special education participants. We’re looking for the collaboration.”

LEAPP meets every month during the school year at the converted Sunnyside Library on Edgewood Road, which now serves as the school district’s office of special services. Professionals from a variety of disciplines are invited to discuss topics of interest based on the specific requests of LEAPP members.

“LEAPP is not just to discuss children with autism; we incorporate many other disabilities in our discussions,” says Fruciano, noting the parents suggest topics for speakers. “Everyone is welcome at our meetings. If parents are having problems getting special services for their children, we try our best to guide them.”

LEAPP offers attendees an easy and laid-back atmosphere. Coffee and Danish are set up in the hallway at 6:30 p.m. A television, with DVD and VCR combo, is in the kitchen for the children of the LEAPP members. Students with the Linden High School ROTC also play with the kids, using markers and paper, while the parents spend two wistfully uninterrupted hours at their monthly meeting.

Recent speakers addressed such issues as the No Child Left Behind legislation, new special education laws and sensory integration issues affecting children with disabilities.

“No doubt, LEAPP is hard,” says Martin, who has a 12-year-old daughter with autism , Aja, enrolled at Soehl Middle School. “It is very hard to get parents involved in outside school activities and moreover to discuss children with special needs. This is something Joann and I knew going in to this battle.”

LEAPP had its beginnings in 2000, when the school district launched a program called “Parent 2 Parent” to share information with the parents of children with disabilities. The program was coordinated through Dona Preston, who was a supervisor of special services and is now the principal of School No. 1 in Linden.

Preston worked with Kathleen Pacheco, a transition coordinator for special services, to develop an ongoing networking program with parents. “Linden is a very diverse ethnic community,” Fruciano says. “The economy is up and down, with people in high-, middle- and low-income brackets. So, the district wanted to do this program to get us all together and share information.”

The school district offered monthly workshops—similar to how LEAPP is set up now—and brought in a range of professionals to make presentations. Fruciano, Martin and others listened to speech pathologists, occupational therapists and experts in autism discuss ways in which their children can have more happy and productive experiences in school and at home.

But while the program was well-intentioned, there was a constant struggle to generate interest amongst the core audiences. The district struggled to attract parents to the meeting; the most who ever attended was six.

Preston says many parents opted not to participate because they did not want the public stigma. It “was hard for them to get over it,” she adds, noting the more well-attended programs involved topics that were not specific to a disability.

“Like anyplace, we have busy parents with limited time,” Fruciano says, noting Preston continually stressed the program should be run by parents in conjunction with the school district. Preston continually sought volunteers; Fruciano and Martin realized they had to step up.

The pair recognized the possibilities that such workshops could provide and did not want to see the program shut down. In fact, they wanted to see the program expanded, incorporating the entire school community.

“Joann and I used to attend and watch some parents come and then different parents come the next month, depending on what parents were interested in,” Martin says. “There needed to be a way to keep people coming consistently. We knew in order for any support group to be effective, you need to get the entire village involved.”

It was certainly a leap, so to speak, but in the summer of 2005 Fruciano and Martin met with Linden Schools Superintendent Joseph E. Martino to have an honest chat about the future of the fledgling program. Fruciano and Martin suggested that it become a parent-run organization, called the Special Education Parent and Professional Organization.

Martino didn’t like the name, as it narrowly focused the organization to focus on families of special education children. “He told us that we really needed to incorporate everyone in the name,” Martin says. “We were always fighting to incorporate everyone, but it never came to mind to include it in our name.”

And so the Linden Educational Association for Parents and Professionals (LEAPP) was born. The arrangement calls for the school district to provide the speakers, the child care, the locations and the refreshments. LEAPP members pay for nothing.

Now run solely by parents, LEAPP is aggressively reaching out to the entire school community; the results are evident at meetings. There are two dozen or so people who attend the monthly meetings, comprising parents, teachers and other professionals from the schools. A holiday feast last December drew 80 people; a LEAPP record.

Martin says the meetings are open to everyone, noting parents from surrounding school districts are also attending the meetings, as their own school districts do not offer such programs. He noted parents from as far as Manville in Somerset County are finding their way to Linden for the opportunity to mingle, share stories and collaborate.

“We need the entire school community to be on the same playing field when it comes to our kids,” Fruciano says. “We need to be educated together. If a child has autism or cerebral palsy, everyone needs to learn how this child learns and flourishes, especially the principals and the teachers. They need to know what accommodations this child requires. That is LEAPP’s mission: to educate the entire community.”

In the upcoming months, LEAPP will play a substantially larger role in Linden. The state Department of Education is mandating local advisory boards to review the district’s special needs programs. In Linden, LEAPP will be the foundation of this board, also comprising regular and special education teachers, parents, administrators, school board members and members of the district’s special services department.

“This advisory council will have more control over what programs come into the Linden schools,” Martin says.

Martin also envisions LEAPP will evolve into a program reaching all of Union County, not just Linden, based on parents’ needs for more information about how best to serve children with disabilities.

“You need to look at the disability community as a whole,” he says. “They are isolated. People gain an understanding of what they need to do and how to get services from talking with other parents who are dealing with the same thing. There is no ready-made guide to help parents who have children with disabilities.”

Each day there are the 1,001 things we all need do, or have done for us, to get by in this world. We need to eat, which sometimes means we need to cook. We need to get dressed. We may need to get out and about. We may have jobs to go to, chores to do, amusements to come up with for ourselves, personal and emotional needs, obligations; our lists go on and on.

But many people with developmental disabilities need help to make these rights on paper realities in their daily lives. And, beyond family, the people who most often help them are direct support professionals (DSP).

Ten years out from the landmark closing of North Princeton Development Center, and decades into the community living movement, DSP’s are at a premium, even as their importance as key components to future plans to support more people with developmental disabilities in more independent community settings becomes more and more evident.

Individuals with developmental disabilities cannot live out the promise of community living without the crucial underpinning provided by these caring and qualified direct support professionals.

Supporting individuals in their home, learning and work lives, DSPs work under various titles—including instructor, residential services technician, residential counselor, employment specialist, family advocate, day program technician, overnight staffer and respite care worker. Their immediate supervisors, often called assistant managers or assistant supervisors, are also DSPs.

“Many DSPs view their job as a profession that demands complex skills and knowledge, ethical judgment, and the ability to create long-term relationships of trust and mutual respect,” says a website for the College of Direct Support, an online training program for these workers. “Many of [their] jobs share similar requirements and approaches including the ability to teach life skills, provide physical assistance, and to support the empowerment, choices and self-direction of the individual receiving supports.”

A brochure for the National Association of Direct Support Professionals puts it more directly: “Direct support professionals enable our most vulnerable citizens to live self-directed lives with dignity and pride. DSPs are the everyday heroes that help people with disabilities realize their dreams and enjoy the daily liberties and human rights that the rest of us take for granted.”

The problem is workers are leaving the field in droves in response to low wages and a real and perceived lack of support, resources and respect.

“As a society we devalue human services and health care, and the people who work in these fields. That’s going to impact direct support professionals and nurses,” noted Jonathan Campbell, a policy analyst with the Alliance for the Betterment of Citizens with Disabilities (ABCD). And just as soldiers are ranked lower than deskbound military officers, people on the front lines of hands-on caregiving are considered below supervisors and management.

This puts direct support workers in a very difficult position: they must sacrifice income and perhaps, personal growth to do the work they love and be there for the people who need them. DSPs may be willing to forego luxuries, but they can’t scrimp on their families. And while limiting direct support work to the single, childless and/or older workers might solve some problems, individuals would not benefit from the life experience and compassion that DSPS gain through parenthood.

Some DSPs end up working 2-3 jobs to make ends meet. All too often, frontline workers seeking better pay and authority end up leaving a crucial line of work.

(TEXT BOX) A bit of terminology: “Direct support” replaces the old terminology “direct care,” a term reflecting the more institutional, paternal attitudes of yesterday. That’s not to say that some individuals don’t still need intense care. Further, Direct Support Professionals is preferred to Direct Support Workers. That reflects the belief that all direct support workers are, can or should be professionals and viewed as such.

Direct support is not limited to the developmental disabilities field, but also serves people with physical or psychiatric disabilities and chronic illness—including people who are elderly, children and youth at risk, and families needing help caring for family members.

Also, “career path” is preferred to “career ladder,” to reinforce the idea that DSP work is just as worthy as supervising and management. Many workers say in forums that they want to stay in direct support, working hands-on with people, and question why they need to choose between their invaluable role and the higher pay and fulfillment they need.

Across New Jersey, 3 out of every 4—and sometimes higher ratios of 1 out of every 2—DSPs leave this line of work every year for other jobs, with serious consequences for the quality of care received by individuals with developmental disabilities.

This personnel crisis has galvanized providers, government officials and advocates in the developmental disabilities field. Specifically, they are working to provide DSPs with avenues to further training and advancement, tied to pay increases. Meanwhile DSPs themselves are starting to advocate for their profession.

The core group behind this effort is the Direct Support Professional Workforce Development Coalition, a group comprised of the New Jersey Division of Developmental Disabilities (DDD), the Elizabeth M. Boggs Center on Developmental Disabilities, and the three major provider agency networks (ABCD, the Arc of New Jersey, and the New Jersey Association of Community Providers).

The two other key partners are the Consortium for Workforce and Economic Development of the New Jersey Community Colleges, and the small but growing Direct Support Professional Association. The Coalition grew out of an April 2002 Summit on Workforce Development convened by the Boggs Center, and followed in September 2003 by a Direct Support Professional Workforce Development Coalition.

In an ideal world, employers could dramatically boost pay and health benefits for these men and women. But that “is neither feasible nor sufficient,” Campbell said. “The reality is if you address wages and benefits, you’d still have problems with turnover.” He noted that among ABCD member agencies, it is the smaller agencies that have the least turnover, perhaps because their size allows a more personal approach to employees.

“Pay is only one of the factors” affecting worker retention,” said Bill Gaventa, Director of Community and Congregational Supports at the Boggs Center. “What also matters is how you’re regarded. Are you involved in the decision making process? Are you well and fairly supervised? Are there decent benefits? It helps if there’s a sense of professionalism, if people feel supported—and that there’s a continual path whereby they can develop skills and get better pay.”

In 2005, advocates recognized and showcased a basic fact: When direct support workers don’t get what they need, individuals with developmental disabilities cannot get what they need.

NJ delegates returning from the national Summit of the Alliance for Full Participation asked the question: What needed to be done in New Jersey to allow individuals to participate more fully in community life? They conducted a statewide assessment, polling individuals and their families, workers and advocates, disability officials and providers.

They learned that the No. 1 priority was to provide direct support workers a career path—a chance to remain, advance and grow in their profession by way of a system of competency-based training linked to pay and career steps.

In response, the Coalition is working with provider agencies to develop that career path, based on certain credentialing levels that would provide direct support workers with something of value, something they could take with them to other job levels, said Gaventa.

He added that strong agency leadership, the kind that filters down to front-line supervisors, is also crucial if New Jersey hopes to turn around the DSP worker shortage. “There are some agencies that have caught the vision and are talking about it with their staff,” Gaventa said.

“We’ve got a grant application into CMS (the federal Center for Medicare and Medicaid Services) to help our Coalition find a way to fund this career path, and to sort through some of these career issues,” he said.

While DSP turnover is a nationwide problem, New Jersey offers special challenges for DSPs and the employers who want to retain them. Low wages—with starting salaries ranging from $8.60 to $10.58 per hour—is a poor match for New Jersey’s high costs of living, one of the highest in the nation.

Add to that the heavy responsibilities and high stress levels that come with caring for individuals with challenging needs common to all DSPs and the pressures mount.

“One remark you hear from DSPs is, ‘Why am I going to work here when I could work at McDonald’s and not get all this grief?’” Campbell said.

He mentioned a flyer published by an affordable-housing advocacy group, depicting a personal care attendant and the caption: “She can save your life, or that of your mother. But she can’t [afford to] live in your community.”

The cause might be different, but the message is just as relevant. Campbell noted that an ABCD member agency, the Metheny School, has significantly lower turnover than other agencies because it offers on-campus housing for staff.

As with many low-wage jobs, immigrant workers figure prominently among entry-level staff. They often need language and literacy training in addition to direct support training.

The Consortium of Community Colleges is seeking NJ Department of Labor funding to offer entry-level DSPs basic literacy courses, computer skills, math and ESL training. But getting that funding may be an uphill fight because DOL would rather focus on “high-end” jobs that “drive” the economy.

Turnover is extremely expensive for employers of DSPs. Statewide research shows it costs a provider agency anywhere from $8,000-$12,000 to replace a frontline worker. That problem may offer a solution. If the flight of direct support talent could be slowed or stopped turnover costs could be used to pay higher wages and for other incentives.

The Coalition is collecting information from provider agencies on how turnover is impacting their bottom line, “so we can determine what kinds of costs could be retrieved,” Gaventa said.

The group is also exploring how the state can fund career paths on a statewide basis, perhaps using federal community care waiver funds. Provider agency contracts now can be negotiated to accommodate DSP training needs.

Demographic changes in the DDD population only intensify the need for training. Today’s DSPs must address more challenging physical and mental conditions, related to age and disability. While group home residents are aging, people moving out of (or diverted from) developmental centers have more severe disabilities and more challenging needs than their counterparts of 10 years ago.

Campbell said that other states have moved ahead of New Jersey in developing a career path for DSPs, and the most successful in this effort are those who have tied continuing education and training to pay increases. Still, he says, “If we moved forward to become the 11^th state to do so, we would not be in the back of the pack.”

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The Coalition has looked at the HS skills standards and considered how they can be built on, and has looked at career paths in other states.

Beyond agency-specific training, there are plenty of resources that can be tapped, including the College of Direct Support, an online training series used by agencies in 25 states; and the state community colleges network. The University of Minnesota’s “Stop the Revolving Door” training module for frontline supervisors and hiring personnel, already used by some New Jersey agencies, presents the message that retention starts with the hire, said Campbell.

“[One] reason for turnover is that you have a warm body in the job, and you don’t have the right person,” Campbell said. “It’s a curriculum that focuses on one of the problems.” Participants view a video in which DSPs talk about the upside and downside of their job, and learn the value of in-depth interviews with DSP recruits and candidates.

Closer to home, the Boggs Center has offered training programs for frontline supervisors. Community colleges can play a key role in boosting the DSP career path, not only by offering continuing education to DSPs, but also by introducing young people to careers in the developmental disabilities field, Gaventa said.

Today, the “basic training kit” handed a new DSP consists of an agency orientation, plus five (DDD-mandated) pre-service trainings that a new worker must complete within their first 120 days on the job. We propose adding three credential levels,” Gaventa said.

Since some of the most crucial learning is on the job, agencies can encourage mentoring and “apprenticeship” arrangements, where more experienced DSPs can supervise newcomers through the learning curve.

Campbell estimates that the total outlay for a career path initiative statewide would range from $400,000 to $500,000, including use of the College of Direct Support online program. “That’s not huge, but it’s still an amount we would have to sell people on,” he said.

Campbell said that two ABCD member agencies have developed a career path system (tied to pay increases) for their DSPs: Metheny School and Bancroft. While it’s early to gauge success with career path programs, Campbell knows of one Arc agency that feels it has reduced turnover.

At the same time it develops the career path concept, the Coalition wants to change the way the Direct Support Professional views his or herself, colleagues and profession in general. That’s the thinking behind the New Jersey Direct Support Professionals Association (DSPA).

Gaventa predicts that growing the group will be difficult; many DSPs have more than one job, which makes it hard to attend organization meetings. Still, he hopes to see a vibrant group where DSPs can meet to compare notes, discuss common workplace challenges and raise the public profile of Direct Support Professionals. As he says in a DSPA document, “A small group has been working steadily on this idea to build a professional network, not a union, which would recognize and enhance the incredibly invaluable work done by direct support staff. Let’s hope it grows.”

In her 16 years of work as a direct support professional, Alison Malnak has seen the upsides and downsides of her job. First the downside: it can be frustrating when an individual resists your best efforts to help them.

“I work as a sub at this supervised apartment where the staff must work daily with this consumer with diabetes who wants to eat potato chips. He’ll say, ‘I don’t care if I pass out and end up in the hospital—you can’t tell me I can’t eat potato chips.’ How do you deal with that? What are you going to do if he knows his ‘rights?"

Supervisors remind the DSP (direct support professional) staff of their responsibility to prevent dangerous eating habits. But they can’t force the individual to stop eating what he wants, Malnak said ruefully.

Would a nurse know what to do? They’re not nurses, and anyway a provider agency is “lucky if we have nurses,” Malnak noted. Would greater training, perhaps in health care, equip these DSPs to deal with such a situation? How do you explain to an individual that adult rights come with adult responsibilities, including basic self-care? (Non-disabled people make foolish eating choices too, but normally a third party doesn’t get blamed.)

She brightens when she describes the good side of her job: “I help this one lady; she has physical disabilities, she can’t speak, but she is so positive. Whenever she comes out of a seizure, she laughs. It’s not like work, she’s like a friend.”

The young woman’s family employs Malnak directly through the Cash Option program.

“The family is so grateful . . . the mother came to a coalition meeting with me. She really respects us [DSPs] as a profession. We aren’t ‘babysitting.’ She’s on the listserv. She cares.”

Malnak speaks haltingly, hesitantly, reflecting a mild case of cerebral palsy that she says has helped her empathize with people. And there is no mistaking her commitment.

“I do like helping the people I support. They’re very good people. They only know to be themselves, and they let you be yourself. They’ll reveal surprising parts of themselves,” Malnak said.

That devotion might explain why Malnak works several direct support jobs, including her full-time position with the Somerset Arc. She’s added another job to her list: attending meetings of the fledgling Association of Direct Support Professionals, helping to get this group off the ground.

“The Coalition has given me a chance to find my voice and to speak for others. It’s given me a bit of leadership,” she says of the association. “I want to help my fellow staff grow. . .”

As Bill Gaventa, Director of Community and Congregational Supports at the Boggs Center, predicted, association attendance is hard to build (see companion article page ). Malnak notices that some DSPs, like her, are willing to travel long distances for a meeting, while others balk at traveling a short distance.

Her employer actively encourages DSP staff to take part in the association, but not all DSPs may be as fortunate.

Malnak concedes that DSPs have differing opinions of what makes them stay or leave the profession. Money, for her, is not the main reason she’s doing this work, and she thinks low pay is not the turn-off that others claim it is. “I wouldn’t be doing this job if I didn’t love it,” she said. “Plenty of other staff have been around a long time.”

“I do like what I’m doing,” Malnak said. “That doesn’t mean we like what we’re making . . . We all struggle. I work three jobs.”

While DSPs “shop between agencies” to find the ones with higher pay, they are also drawn to the more progressive-thinking providers who respect them as professionals, she says.

“I’ve had to put my personal thoughts aside when people talk of money at these meetings [because] I want to speak for staff who can’t make it to the meetings.”

But DSPs share a common experience: of struggling financially, of feeling “left out of the loop” of decision-making, of frustration at their lack of training or resources to meet the needs of individuals they support, and of the need to be respected.

“The training’s not great right now” compared to the expertise level expected of DSPs working in residential services, she said. “You’re asking someone to take care of someone with a heart problem, with diabetes. You’re put into a position where you’re not paid very well, but you’re being held responsible for someone’s health, and you’re not sufficiently educated [for that].

“People are leaving. So many staff are leaving, and a lot of them want to be nurses,” she said. “About 20 percent are studying to become nurses.” She explained. Staffers figure that they’re already shouldering serious health care responsibilities—so why not go for the training, status and higher pay that comes with those responsibilities? As a nurse not a direct support professional.

Malnak believes that the Coalition’s efforts (the Direct Support Professional Workforce Development Coalition—see page ), through the Career Path initiative and the Direct Support Association, can go a long way toward addressing these circumstances.

“They’re hoping that you’re going to be taking classes. Every time you reach a credential level, you’ll get paid better. You’ll be paid at a level respectful of the skills you’ve attained . . . Staff who come and want to stay will get the training they need and deserve, get respect, and feel more empowered. They won’t be in the dark about things, and they will see that they are valued enough to have information passed to them. . . We can become more of a team.”

The young woman’s family employs Malnuk directly through the Cash Option program.