Standing Up For The Rights Of People With Intellectual Disabilities-----
Further report on the VOR Washington Initiative this year
Standing Up For The Rights Of People With Intellectual Disabilities, Family Members Take Our Concerns To Congress
By: Mary O'Riordan, President, Parent Hospital Association, Sonoma Developmental Center.
California representatives were briefed on important issues affecting people who are medically fragile and are fully dependent on 24-7 care for their survival. We visited all members of Congress, as well as our two state Senators and other key federal agencies within the Administration.
The purpose of our visit to our elected representatives was, most importantly, to try to get them signed on as co-sponsors of H.R. 2032, if possible, or at least get them to support this Bill. This legislation, if passed, would require that residents of Intermediate Care Facilities, such as Sonoma Developmental Center, and their families and/or legal guardians be notified in advance of a class action lawsuit involving the closure of the facility where they live. They would be given a time limited opportunity to opt out before the lawsuit is filed. Lawsuits by federally funded attorneys have resulted in residential closures and the eviction of thousands of developmentally disabled individuals, without regard to their choice of staying in their homes where they have lived and thrived for many years. This very often has tragic outcomes – preventable deaths, homelessness, abuse, neglect, prisons.
This important legislation was introduced by Democratic Congressman Barney Frank of Massachusetts; Republican Representative Bob Goodlatte; of Virginia; Democratic Representative Debbie Wasserman Schultz of Florida.
Americans with severe and profound intellectual disabilities are being seriously threatened by these class action lawsuit and the closure of their homes. Reduction in budgets, and a shift of basic government philosophy that dictates all people are allegedly better served living in a community setting, such as board and care homes, or group homes. This often means that needed medical, and dental care, and other specialized care is reduced or non-existent once they leave these facilities which has all the centralized services to provide specialized care for this unique population.
Many of the important programs that serve this vulnerable population come from the Federal level, such as Social Security and Medicaid. Many laws have been passed on the Federal level that affect where this vulnerable population may live. Many of these laws are being misused by those with an agenda to close all congregate type care, where all the necessary services are centralized and are excellent, an example of this is the Sonoma Developmental Center and the other developmental centers in the state.
It is important to note that nothing in the Olmstead Decision, Olmstead v. L.C.119 St. Ct 2176 – speaks of the elimination of all congregate type facilities. The following is a quote from Justice Ginsberg:
”We emphasize that nothing in the ADA “Americans with Disabilities Act “or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119.S. Ct.2176,2187 (1999)
That's what the law states, yet the Regional Center case workers, Disability Rights Advocates, and numerous others who make decisions that are ideologically based constantly reference the Olmstead Decision as the law that gives them the right to close all Intermediate Care Facilities (ICF's) in the state. This leaves frail, disabled people without the necessary medical, dental, professional staff and oversight for medications that they need for their very survival.We all remember the Reagan years in Sacramento when all the facilities for mentally ill people were closed and we see every day the horrible outcome – people on the streets and in the prisons instead of being in treatment centers. The same tragedy has been now happening to developmentally disabled people.
I know we will have those with opposing views on this come forward with examples of all the wonderful homes in the community and how well every disabled person is doing. They will show you their few wonderful homes but what you need to see is the hundreds of inadequate, unsuitable and inappropriate homes. Also, listen to the families – not the highly paid advocates, the money-making vendors, the lobbyists, and the case workers who accommodate them.
Your help is needed. Letters from all our friends and supporters would be greatly appreciated and should be sent to Senators Feinstein and Boxer, Representatives Nancy Pelosi, Lynn Woolsey, George Miller, Barbara Lee, Mike Thompson, Jackie Speier. Gerald McNerney, Wally Herger, Dan Lungren, Doris Matsui, Barbara Lee, Laura Richardson, Pete Stark, Zoe Lofgren, Anna Eshoo, Mike Honda, John Garamendi, asking them to co-sponsor H.R. 2032.
Suggestions for your letter – remind them that VOR members throughout the country visited Congressional offices last week. In case your office was not able to schedule an appointment for a VOR member to visit, our VOR members were seeking support for H.R. 2032, and seeking cosponsors and seeking a Senate companion bill. This legislation is very important for the continuation of specialized services for developmentally disabled people Please give this request your fully attention and support.
Important: We were told by several of the offices we visited that Disability Rights people called their offices that morning asking them to oppose this legislation. As we pointed out to the staff people we met with, Disability Rights is the state version of Protection and Advocacy and they are the ones who usually file these mean spirited lawsuits.
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Further report on the VOR Washington Initative this year
Generally I feel that we have reached a level that is impressive. First of all, when calling for appointments, I was amazed at how many people are familiar with our organization and were very receptive to accommodating us for a meeting with them. On the other side of things, there were a few who only wanted to meet with constituents and that presented a problem – so in those cases, we stopped by and talked for a few minutes who whoever could give us a few minutes aof their time, and dropped off the folders. That is why we all need to look over the list and see who our representative is and make an appointment in their home office. If you can't get an appointment with the congressperson, its okay to speak with their legislative aide or whoever will meet with you, but the important thing is to do it.I was proud that Parent Hospital Association (PHA) was able to be the Gold Sponsor for the event. Thanks to all members who contribute to our fund raising events which enables us to do this, as well as the many other worthwhile things we do.
We had very good speakers for the Saturday all-day meeting. Following are some of the highlights of the meeting – they were all dynamic speakers and kept our attention even with the long hours.
Clare Ansberry, Pittsburgh Bureau Chief and Reporter, for the Wall Street Journal
Clare is a seasoned writer who has focused on long term care issues, often featuring the plight of aging parents caring for their adult children with disabilities. In 2006, Ms. Ansberry received the “Darrell Sifford Memorial Prize in Journalism” for three such articles. The Sifford Award recognizes reporters who “depict the personal struggles and triumphs that together make up the fabric of everyday lives.”
As Wall Street Journal Managing Editor Paul Steiger noted, “In spite of considerable media coverage about the aging, the plight of a generation of parents who have been consumed with caring for their developmentally disabled children, has been largely overlooked.” Ms. Ansberry's series of stories portrays the “heroic efforts of two of the nation's most vulnerable populations – the aging and the developmentally disabled – struggling in concert.” She gave some heartwrenching examples.
*****
Samuel Bagenstos, Principal Deputy Assistant Attorney General, U.S. Department of Justice, Civil Rights DivisionSince 1999, Bagenstos has been a law professor; he has taught at Harvard, Washington University in St. Louis, UCLA, and the University of Michigan. He has taught constitutional law and civil rights law, written extensively on disability rights and civil rights more generally, and continued to litigate civil rights cases (usually pro bono). During that time, Bagenstos played a key role in defending the constitutionality of the Americans with Disabilities Act and its abrogation of state sovereign immunity. He represented individuals with disabilities in a number of cases in which defendants attacked the statute as unconstitutional, including Tennessee v Lane and United States v. Georgia – two cases in which the Supreme Court upheld the statute against such attacks.
Bagenstos graduated with Highest Honors and Highest Distinction in 1990 from the University of North Carolina; he received his law degree magna cum laude in 1993 from the Harvard Law School. He clerked for Judge Stephen Reinhardt on the United States Court of Appeals for the Ninth Circuit and for Justice Ruth Bader Ginsburg of the Supreme Court of the United States.
This guy was a very dynamic speaker, but when people kept pressing him on the issue of choice, he refused to answer yes, he side-stepped the questions, so obviously he is not for the choice of an ICF.
William Choslovsky, Partner, Neal, Gerber & Eisenberg, LLP
William Choslovsky is a member of Neal Gerber Eisenberg's Financial Restructuring and Bankruptcy Practice Group. Named an Illinois Super Lawyer in 2009, he is also a litigator and has experience representing developers on real estate and work-out matters. He serves as a member of the Misericordia Board of Advisers and has also served as the chair of the Chicago Bar Association, YLS Bankruptcy Committee. Bill's sister is a resident of Misericordia, a private ICF/DD in Chicago.
Bill was among the team of pro bono attorneys that helped secure intervention and a favorable settlement in the class action lawsuit involving all private ICFs/DD in Illinois with more than 8 residents. Due to Bill's legal representation and advocacy, residential choice was preserved for thousands of Illinois developmentally disabled people and their families. After graduating from Harvard Law School, Bill clerked for Justice Jay A. Rabinowitz of the Alaska Supreme Court and Judge Wiley Y. Daniel of the U.S. District Court for the District of Colorado. He earned his J.D. from Harvard School of Law in 1994. In 1990 he graduated summa cum laude,from the University of Illinois at Urbana-Champaign with a B.S. In accounting.
This man was very informative and gave us real examples of difficulties that all sounded so familiar.
*****
Stephanie D. Vance, Advocacy Associates, LLC
Stephanie Vance, the “Advocacy Guru” of Advocacy Associates, LLC is author of “Government by the People”: How to Communicate with Congress, the Fabricator Guide, Get a Job on Capitol Hill, Citizens in Action and the recently released Advocacy Manual: A Practitioner's Guide. She has over 20 years of experience in Congressional affairs, having worked in a prominent DC law firm, lobbied for National Public Radio and worked in various Congressional offices, holding positions as Legislative Director and Staff Director. Stephanie is the only advocacy trainer to hold the prestigious Certified Speaking Professional (CSP) designation from the National Speakers Association.
She gave us some wonderful insight into how best to reach our congresspeople and staff and what to do and say and what not to do and say. She was also very amusing.
If ever we can afford it, I would recommend bringing her to speak to our organization.
*****
The bottom line is we are gaining ground and recognition as family members of developmentally disabled people. We need to stop for a second and reflect on what it was like 50 years ago and prior to that time. I hate to even reflect on it – how could anyone ignore and refuse to acknowledge their disabled child – yet, it's easy to understand the fear and pain involved and we must never judge. We now know what an important part they play not only in our lives but in the lives of everyone who has the privilege of getting to know them well. Their unconditional love, their innocence and their courage in facing every day of their lives so disabled and yet are able to greet us with a smile. They truly are our heroes and every ounce of energy we put into making life better for them is time well spent. We can only go forward now, we have reached a plateau and we will build on the seeds we have sown and the foundations we have built. It is our privilege.
I look forward to the day when all families, those who do not have a developmentally disabled child as well as those who do, are equally involved, engaged and concerned. I look forward to the day when every legislator has the needs of developmentally disabled people at the top of their list of priorities. Then and only then will be on an even playing field.
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