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Health
Access
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Breaking
the Silence
Do
you think that your disability makes you immune to violence? As a
woman with a disability, you would be wrong. In fact, there could
come a time in your life when you could be dead wrong.
The conference was a collaborative effort of the following
organizations: NJ Coalition of Woman and Disabilities, Inc.; NJ
Coalition of Battered Women; NJ Division of Disability Services,
DHS; People Support Network of New Jersey; NJ Division of Deaf and
Hard of Hearing, DHS; NJ Coalition Against Sexual Assault; Southern
New Jersey Perinatal Cooperative; and the NJ Council on
Developmental Disabilities. In
her keynote address, Heather B. Taylor, PhD, described the magnitude
of the crisis. She is the Assistant Director of Research, Center for
Research on Women with Disabilities (CROWD) at the Baylor College of
Medicine, Houston, Texas. Taylor pointed out that “violence against
woman with disabilities is an international problem.” The occurrence
of violence was found “to be 10 times more likely” among women with
disabilities, and the woman with a disability endures the abuse for
a longer period of time.
Taylor listed the various, and often unique, types of abuse that
women with disabilities may experience. Studies show that four out
of five women who have physical and/or cognitive disabilities will
be sexually abused in their lifetime. Unfortunately, an abuser of a
woman with disabilities often has a greater opportunity to punish
her in unique ways simply because the woman is disabled.
The CROWD study compared 475 women with disabilities and 406 women
without disabilities. Women with disabilities often encounter
violence in situations that are unique to their particular set of
circumstances. These may include medical settings and relationships,
and dealings with personal assistants. At times, victims may have
“difficulty naming the violence.” A
number of proposals were suggested to deal with the crisis in
Taylor’s keynote address and other workshops (which will be
discussed elsewhere in this newsletter and in subsequent issues.)
Despite the fact that Mark Malone is a man, he felt that as the
coordinator for the Somerset County Office of the Disabled, it was
important that he attend the conference. Malone thought it might
give him some insight and increase his awareness concerning the
subject. For example, he will now be alert should a consumer tell
him that there is no alternative but to move from the person’s
present situation. Malone felt it was one of the best conferences he
ever attended. With the approaching 15th anniversary of the passage of the Americans with Disabilities Act (ADA), it seems that the voice of the disability community remains unheard in many areas. However, none appears more urgent than the plight of the abused woman with a disability.
Hearing the "Unheard Voice"
How to discover “the unheard voices” of women who are abused is a
difficult problem. Health care workers and other providers who
attended the conference workshop entitled “Stop the Violence, Break
the Silence: Disability Service and Healthcare Workers Institute”
learned the definition of abuse, the types of abuse common to women
with disabilities, and how to deal with individuals who reveal
abuse.
The presenters, Michelle “Shell” Schwartz, MA and Heather Anne
Kamper, LMSW, are from an organization called A Safe Place (a safety
awareness program) based in Austin, Texas. Beside statistics, their
workshop supplied definitions of caregiver and caregiver abuse.
Their workshop also provided useful materials, which dealt with
various aspects of domestic, and/or caregiver abuse.
Abuse is defined as “the use of power in a relationship where the
individual with a disability should have the right to absolute
safety in his or her environment.” Caregiver abuse refers to the
exertion of a caregiver’s will over the person with a disability.
Abuse by a caregiver often involves more than physical injury.
“Overuse of restraints, medication, or keeping an individual awake”
are also considered forms of physical abuse.
Abuse may also include a long list of psychological mistreatment.
Denying an individual their right to decision-making is a type of
emotional exploitation. Making derogatory remarks about one’s
disability is verbally abusive and should not be tolerated. Denying
access to the individual’s financial resources is also caregiver
abuse. A
crisis center for victims of domestic violence means little to a
woman with a disability if there are physical barriers that prevent
her entrance to the facility. Therefore, it is imperative that
shelters and agencies dealing with all forms of abuse comply with
the Americans with Disabilities Act (ADA). It is important to note
that “Community Development Block Grants (CDBG) and Home Investment
Partnership Programs (HIPP) may have funds available for
accessibility modifications for existing shelters or new
construction.” For further information, service providers should
consult their local municipality or area HUD office.
Program access is just as critical as physical access. Perhaps the
service provider’s reaction to a victim’s report of abuse is just as
crucial. Like every other woman, a story of abuse told by a woman
with a disability must be believed. Individuals with disabilities
are all too frequently dismissed as not knowing what they are
talking about. It is important to “validate” the feelings of a
person who has suffered harm at the hands of another. Having correct
information is imperative for reporting the abuse to the
authorities. Although the emphasis of this article is the role of the service provider, people with disabilities must be ready to reveal abuse. Today, more providers are willing to listen to victims who cry out for help. But you must be your own best friend, and cry out loudly for help!
HIPPA Confusion
The Health Insurance Portability and Accountability Act (HIPPA) was
passed in 1996 to protect confidential healthcare information by
improving security standards and legislation on privacy. In an
attempt to keep up with technology, the United States Department of
Health and Human Services has issued new regulations under HIPPA.
HIPPA provides specific standards for protecting patient information
during electronic transmission. It also offers guidelines for
medical professionals and their office staff for dealing with this
information.
While the new HIPPA Privacy Rule became effective on April 14, 2003,
the HIPPA Security Rule will not become effective until April 21,
2005. The hundreds of pages of new regulations have healthcare
professionals thoroughly confused. Patients across the country have
found themselves in nightmarish situations because of this
confusion.
There have been reports of delayed treatment because doctors do not
want to transmit necessary medical information to other healthcare
professionals involved in the patient’s care. Patients are being
asked to sign blanket HIPPA release forms before treatment can begin
and some family members are being denied the right to participate in
a loved one’s care.
These regulations were intended to protect a consumer’s private
healthcare information from unscrupulous use, not to impede their
medical care. Training of healthcare professionals will be essential
to ensure compliance with the new regulations without endangering
patients. A
private doctor or healthcare facility can certainly transmit
pertinent information to other caregivers without a signed
authorization. The minimum security standard does not apply in the
case of disclosure of information for treatment.
Family members who are involved in the patient’s care can also be
given information without a signed consent form. If a patient is not
present or is not competent, the doctor may use his/her discretion
whether to disclose information or not. The patient may also have a
family member present in the examination room without signing
anything to have this privilege. However, if a family member is
requesting copies of the patient’s personal healthcare documents, a
signed release form will be required before any documents are sent.
Can friends, acquaintances and family members still get general
information about a patient from calling the hospital? Yes, there is
nothing in the new regulations that forbids a hospital from
disclosing a patient’s room number, phone number in that room or the
general condition of the patient. On the other hand, if a friend or
family member happened to work at the hospital and used his/her
position to gain access to the patient’s private information, i.e.
test results, diagnosis, billing information, the facility would be
in violation of the law and the facility could be open to a lawsuit. These are only a few of the issues that effect consumers under the new HIPPA regulations. Doctors, healthcare facilities, insurance companies and other healthcare professionals are struggling to understand and comply with the new rules. We will keep you informed about the issues most pertinent to you, as a consumer, as April 21, 2005 approaches.
Legislative Update
Legislation was passed on June 14, 2004 establishing the New Jersey
Prescription Drug program to reduce prescription drug prices for
consumers with disabilities, senior citizens, working families, and
other low-income individuals. A.1593/S.590 includes a discount card
and the establishment of an advisory council comprised of the
Commissioners of Health and Senior Services and Human Services,
medical professionals, pharmacists, and health care consumers.
The federal Pharmaceutical Market Access and Drug Safety Act of 2004
(S.2328), co-sponsored by Senators Byron Dorgan (D-North Dakota) and
Olympia Snowe (R-Maine), was introduced in April. The bi-partisan
bill would legalize and regulate importation of prescription drugs.
Former Governor James McGreevey signed legislation creating the
first nationwide facility for stem cell research on May 12, 2004 at
a forum of 200 people at the University of Medicine and Dentistry (UMDNJ).
The Stem Cell Institute of New Jersey will be a joint effort between
UMDNJ and Rutgers University, supported by the state and funded
through a public/private partnership. The Institute’s mission will
be to advance and fund research to find cures for heart disease,
cancer, diabetes, multiple sclerosis, Parkinson’s disease,
Alzheimer’s disease, spinal cord injuries and other diseases.
Other legislation suggested by members of the Women’s Health Care
Task Force were reviewed and/or voted on again in 2004. One was the
establishment of a public awareness campaign on post-polio sequelae,
introduced as A.2486 and passed by the General Assembly that year.
The bill was re-introduced as A.1988 in February 2004. It requires
the Commissioner of DHSS to develop educational materials with
health care facilities and providers with expertise in post-polio
sequelae to be made available to local boards of health, medical
professionals, hospitals and clinics for distribution to consumers.
Another bill, A.336, providing in-network benefits to patients with disabilities for services provided by out-of-network providers under certain circumstances, passed the General Assembly in March 2004, and awaits action in the New Jersey Senate.
New Committee for Men with Disabilities
In
the inaugural issue of this newsletter, we described how a steering
committee of women with disabilities, supported by the NJ Council on
Developmental Disabilities, embarked on a journey to improve the
quality of health care and assure that health professionals are
knowledgeable and sensitive to their needs.
Now we’re being joined in this Health Access effort by a committee
of men with disabilities, under the leadership of Council member
Stanley Soden. During the coming year, they will develop a survey
for men with disabilities to determine health-related issues and
barriers, and follow-up with a statewide conference in the fall of
2005.
Over time, we envision that these two groups will be merged into
one, viable People with Disabilities Healthcare Task Force, with a
single, small leadership committee made up of members from each
group’s steering committees. In the process, we will unveil a new membership status to seed a growing network of persons interested in the issues of health care. Membership benefits will include receiving Health Access newsletters, notices about upcoming events & conferences, opportunities to join in advocacy activities and legislative efforts, public education speaking engagements and more!
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WOMEN'S HEALTH CARE