Date: Mon, 8 Apr 1996 01:05:52 -0600 From: sara karon Subject: Personal Assistance Services To: Multiple recipients of list MADNESS ... for Psychiatric Survivors. Personal Assistance Services for Psychiatric Survivors- Testimony of Lorelee Stewart before the National Council on Disability September 10th, 1992. My name is Lorelee Stewart and I live in here in Massachusetts. I am a 28 year old Personal Assistance Services user with a psychiatric disability. I am the External Vice President of the National Council on Independent Living and a member of the National Association of Psychiatric Survivors. I'm very honored to be here today to testify on the need for a national Personal Assistance Services program, which among other groups would serve people with psychiatric disabilities. I commend the National Council for their foresight in holding this hearing to illuminate and document the national need for cross-disability Personal Assistance Services. I currently work as the Executive Director of the Independent Living Center of the North Shore, a human service agency which helps disabled people live independently in the community with appropriate support services. Our center is run and staffed by disabled people, and we are all given reasonable accommodation to do our jobs. For me, part of my reasonable accommodation is to receive Personal Assistance Services when needed for job related activities. Primarily, I use this assistance for traveling. This is paid for by my employer. Unfortunately, my employment situation is rare. Normally, disabled people who need Personal Assistance Services are only given them as a work accommodation from organizations that are run by other disabled people. Though I am applying for personal care services I will likely be found ineligible for the Massachusetts Personal Care Attendant Program, which is run through Medicaid, because of its categorical approach to determining eligibility, which excludes my disability. I became disabled at the tender age of three when an uncle, who was a member of a satanic cult, began to sadistically abuse me, physically, mentally, and sexually. This abuse went on for approximately four years. The acts of torture that were done to me are simply unspeakable. Finally when I was seven this uncle died. At the age of eight until ten I was sexually abused by a second uncle who also passed away. From an early age and throughout my childhood I also experienced physical and emotional abuse from my parents. As a survivor of such extreme torture each and every day is a struggle for life. The after effects of this prolonged and severe abuse have caused my psychiatric condition, called Complex Post-Traumatic Stress Disorder with dissociative symptoms. Post-Traumatic Stress Disorder was first identified when we began to understand the aftereffects of war experienced by our Vietnam veterans. As more and more women, and many men, find the courage to remember and speak about incest and child abuse it will be hard to ignore that we have a silent war raging out of control in our homes and communities across America. This war has and continues to claim the lives of countless children and adults who die either at the hands of abusers, or by suicide because they cannot get the help they need to survive on a daily basis or find adequate, compassionate psychiatric treatment. I am here today to talk to you about the need for personal assistance services for those of us who survive but live with trauma related psychiatric disabilities. People with trauma related disabilities and others with psychiatric conditions desperately need personal assistance services. It is my hope that the National Council will take a leading role in creating a national cross-disability, consumer directed, PAS program. My speaking today is an effort to fight for my own life. I don't want to be one of the casualties- I didn't remember my childhood at all until I was twenty. i felt empty and asleep. Then one day during my Junior year at Harvard College, I woke up, alive and hurting. I began to have flashbacks of the abuse. I basically have four types of flashbacks: a scene flashback, where I see pictures of the abuse as if I were reliving it without the feelings; a feeling flashback, or a panic attack, where I have no mental pictures of the abuse but experience the fear and terror of the abusive acts; a sensory flashback, which contains no pictures or feelings but may have smells or sounds that were part of the acts, like commands, screams, cologne, or alcohol; or a complete flashback where all or some of these sensations are combined into a more total and frightening picture of the abuse. At times I feel extremely depressed and suicidal, wishing I had never survived the abuse at all. This, I'm told, is very common for abuse survivors. I also have a sleep disorder and additional physical illnesses as a result of the extreme stress I live with. These disabling effects make it difficult at times to perform simple activities of daily living. There are times when I am completely capable of handling everything. There are also times when, due to my disability, I barely get by and need a lot of assistance. With the exception of work, this help comes from family and friends, often placing strains on my personal relationships and prematurely ending some friendships simply because the help I needed had become too much of a burden. I feel that this level of assistance is beyond what should be expected of a friend or family member. I would like to be able to pay an assistant to do the things that my friends do now, begrudgingly, for free. I do have a psychiatrist and a psychologist that I work with. They, of course, are both paid. I use them for specific things which require extensive training like psychopharmacology and 24 hour emergency crisis link-up. Most of the help that I need does not require the same degree of expertise and training. I have people who help me balance my checkbook when I cannot do so myself because I'm depressed or people who accompany me on a food shopping trip because I feel too panicked to go alone, for fear I might have a flashback in public. I pay between $8 - 10 an hour for someone to assist me in these ways. When I cannot find a volunteer or don't have the money to hire someone, I go without help and my ability to do things is limited and my safety becomes endangered. Having this type of assistance enables me to follow the advice of my doctors even when my panic attacks are so severe that I cannot remember to take my medicine. The best analogy I can make is someone who, when they're healthy, designs a living will or a Health Care Proxy to make decisions for themselves when they become unable to do so. When I ask someone to work for me, I teach them how to do things that I temporarily cannot do for myself. In the event of a severe panic attack my assistant, who has been previously trained by me to give me my prescribed dosage, does so and I eventually feel better. If I don't have this type of assistance, the only other option is hospitalization or a day treatment program. Neither of these options allow me to maintain a job. I would like to reiterate that the assistance I need is due to a disability and is not the result of laziness. A personal assistant is by no means a maid service. I would like to see a national Personal Assistance Services program set up which has eligibility criteria that is based on functional limitation rather than disability label. People with all types of disabilities can benefit from some kind of Personal Assistance Services. Because I am involved with many people who have psychiatric disabilities on the National level, I am certain that others will want to use Personal Assistance Services to help them live more independent and fulfilling lives. The philosophy that is used for Personal Assistance Services for persons with physical disabilities would work equally as well for people with psychiatric disabilities. Essentially, assistance provided by an employee of the disabled person performs tasks the disabled person can't do because of their disability. This provides Dignity, Control, and Independence. Consumer control has been the key to successful Personal Assistance Services for people with physical disabilities and would be so for a program which included psychiatric disabilities as well. People with psychiatric disabilities do not want to be assigned a "caretaker" to watch over them paternalistically. We want to have complete control over who assists us with our personal matters. Drastic policy changes need to be made in this country in order for a disabled person to truly take their place in society as independent, productive citizens. The Americans with Disabilities Act has explicitly promised this to the disability community. However, without a comprehensive, cross disability, consumer controlled Personal Assistance Services program and other necessary community oriented assistance, the dream of the Americans with Disabilities Act will never be fulfilled. Those who are most severely disabled, yet able to live and work independently with Personal Assistance Services, will be left behind as unnecessary prisoners of institutions without them. The concept of Personal Assistance Services is truly beautiful because it makes all policy makers happy. If you are concerned with establishing policy that ensures people's civil rights, and gives them independence and dignity. then Personal Assistance Services is the way to go. If you are a policy maker who is concerned with a service system that has proven success and is cost effective, then a Personal Assistance Services Program is the way to go. Personal Assistance Services makes everyone a winner: the policy makers, the independent individuals with disabilities and the society that benefits from their presence. Again, thank you for the opportunity to speak before you today on the need for a national Personal Assistance Program. I look forward to supporting your efforts in any way possible. I currently work as the Executive Director of the Independent Living (Center of the North Shore, a liulikan service agency which helps disabled people live independently in the community with appropriate support services. Our center is run and staffed by disabled people, arid we are all given Reasonable Accommodation to do our jobs. For me, part of my Reasonable Accommodation is to receive Personal Assistance Services when needed for job related activities. Primarily, I use this assistance for traveling. This is paid for by my employer. My employment situation is unfortunately rare. Normally, disabled people who need Personal Assistance Services are only given them as a work accommodation from organizations that are run by other disabled people. I am not eligible for Massachusetts Personal Care Assistance Program, which is run through Medicaid, because of its categorical approach to eligibility, which excludes my disability. I became disabled at the tender age of four when two uncles began to sadistically abuse me, physically, mentally, sexually. This continued for over fourteen years. Life for me is a daily struggle. The after effects of this prolonged abuse have caused my psychiatric condition, which is Chronic Post Traumatic Stress Disorder. I didn't remember my childhood at all until I was twenty. I felt empty and asleep. Then one day during my Junior year at Harvard College, I woke up alive and hurting. I began to have flashbacks of the abuse. I basically have four types of flashbacks: a scene flashback, where I see pictures of the abuse as if I were reliving it without the feelings, a feeliiig flashback, or a panic attack, where I have no mental pictures of the abuse but experience the fear and terror of the abusive acts; a sensory flashback, !ssion could have gotten worse and my safety placed in Jeopardy. Presently, I do not receive any funding for Personal Assistance Services under Massachusetts programs. I do receive some assistance from my employers for work related activities, such as overnight travel. I have applied for Personal Assistance Services through a local Independent Living Center which acts as a vendor for these services for Medicaid. I expect to be denied these services because the eligibility criteria categorically excludes people who have psychiatric disabilities. If denied these services, I will appeal the decision to the highest level with the hope of changing the existing system. Conclusion It is Inappropriate and demeaning for people with psychiatric disabilities to have to rely on an employee or even family or friends to assist then with daily activities. People with psychiatric disabilities deserve the privacy, dignity, and independence that comes from the use of a personal assistant. it Is also important to note that it is absolutely unnecessary for this assistance to be provided by a professional, just as it is unnecessary to have a nurse provide catheterizations. People with psychiatric disabilities must be able to access PAS in order to truly live independent, dignified lives in the community. If given the choice, few psychiatric survivors would rely on the services provided by the mental health system. In fact, many persons end up in the mental health system precisely because of the lack of personal assistance and other community-based support services. Usually after a few weeks people with psychiatric disabilities are released from the mental health system back into the same inadequate situation. This is not unlike a quadriplegic who ends up in the hospital with a pressure sore from sitting too long in his wheelchair because he has no one to assist him in laying down. He enters the hospital, the sore is healed, and then he is sent back to the same situation of inadequate personal assistance to repeat the cycle. A national Personal Assistance Services program MUST include principles from the Independent Living movement, such as consumer-control, and cross-disability service. All individuals ,who need assistance with activities of daily living,- whether it be physical, cognitive, or emotional, must be afforded the opportunity to access Personal Assistance Services. This is consistent with eliminating needless dependence of disabled persons on medical and mental health professionals. A national Personal Assistance Program supports the opportunity for all people with disabilities to live, work, go to school, and be with friends and family in their own communities. Establishing a cross-disability Personal Assistance Services program is a necessary step in the effort to secure freedom, independence, and equal opportunities for all Americans with disabilities. About the Author Lorelee Stewart is the Executive Director of the Independent Living Center of the North Shore in Lynn, Massachusetts, External Vice President of the National Council on Independent Living, and a member of the National Association of Psychiatric Survivors. She has Post-Traumatic Stress Disorder and uses Personal Assistance Services to live and work in the community.