VOR (Voice of the Retarded) explains why this bill is desperately needed:
...Twenty-eight federally-funded class action lawsuits have been filed, resulting in the closure of at least 15 ICFs/MR in 9 states, involving thousands of individuals with developmental disabilities. Federally-funded attorney groups are most often motivated by a bias against the ICFs/MR option when filing these lawsuits. Since 1996, every federally-funded class action has been for the primary purpose of removing residents from their ICF/MR home ('community integration'); the condition of care at the targeted ICFs/MR was not at issue in any of these cases. An added offense is the fact that most of lawsuits filed against U.S. Department of Health and Human Services (HHS)-funded ICFs/MR are filed by HHS-funded Protection and Advocacy (P&A) agencies, making these cases, in effect, HHS v. HHS, an absurd use of scarce federal dollars.
Federal law (see e.g., the DD Act) embraces the policy that individuals and their families/guardians are the “primary decisionmakers” regarding the services and supports received. H.R. 1255 would help ensure that this promise is real for ICF/MR residents and their legal guardians who find themselves caught up in a lawsuit they do not support, being represented by attorneys who do not even consult them.
HR 1255 requires that the federally funded entity (usually P & A) notify an ICF/MR 90 days before filing a class action lawsuit against the facility. The facility then notifies residents and their legal representatives (usually close family members) and gives them the opportunity to elect not to have the lawsuit apply to them. P&A or other organizations may still file the lawsuit on behalf of those who wish to participate. The bill does not in any way interfere with the organization's ability to file lawsuits on behalf of individuals in the facilities or to otherwise protect their rights. Neither does it affect the right of other developmentally disabled citizens to appropriate community services.
Whether you have a family member living in an Intermediate Care Facility or not is beside the point. If federally funded lawyers ever decided to pursue a lawsuit on behalf of your family member, would you want to be notified? Would you want to have the right to decide whether or not these attorneys represent your family member or whether the lawsuit is needed? HR 1255 leaves these decisions to the people affected by the lawsuit and their families and guardians, not to federally-funded attorneys.
Many influential advocacy groups support the closure of all facilities and all other "disability-only" programs designed specifically to meet the needs of people with developmental disabilities. They have sent out alerts urging you to tell your Representatives to oppose this bill on the grounds that it will harm the efforts of parents and advocates to work for community services and supports needed to live in the community. I'm surprised that they provide links to the bill itself, because anyone who reads it will see that it has nothing to do with this. I guess they don't think you will bother to read it. I hope you will. And while you're at it urge your Representative to co-sponsor and support the bill.
4 comments:
I have to disagree completely with this post and would suggest people should contact their Representatives and tell them to oppose this legislation.
Having a full range of appropriate remedies, including the use of a class action, has been a keystone to protecting the civil and legal rights of individuals with developmental disabilities in all facets of their lives, including community integration. The Developmental Disabilities Act of 2000 reaffirmed the authority of the Protection and Advocacy systems to use any and all legal remedies appropriate to ensure the protection of individuals with developmental disabilities, including class actions.
There is also a misconception that H.R. 1255, which breaks new and dangerous ground by allowing class representatives to opt out of cases seeking injunctive relief, is somehow a needed legislative change. However, current Federal Rules of Civil Procedure provide guardians and family members with a number of protections, or “voice”, including appropriate notice, class certification requirements, the right to intervene, and a fairness hearing on the final outcome.
A regrettable part of the history of people with developmental disabilities, particularly those with severe cognitive or intellectual disabilities, is that all too often the public and private systems designed to serve them have not served them well – even engaging in abusive and neglectful treatment of individuals. At the same time, families, guardians or representatives remain unaware of the situation, often relying on the abusers themselves to assure them that all is well.
The glaring example that exposed the horrendous abuse and neglect of people with developmental disabilities in institutional settings nationwide was the 1972 expose of the Willowbrook institution in New York. However, such offenses have continued to occur today, and most often in large and inappropriate institutional settings far from the eyes of the community. In March in Texas, it was discovered that staff that had been hired to care for the residents had been forcing them into “fight club” style battles.
Since 1972, many things have changed. Federal legislation was enacted that ensures children with disabilities access to a free, appropriate, public education. States, Congress, and the federal government have developed family support programs that allow families to have access to the supports they need for their children with disabilities to live in the community. All these changes have provided parents of a child with a disability with a much wider range of options than were available to parents in the 1950s and 1960s.
Enactment of legislation such as H.R. 1255 will jeopardize the well-being of thousands of individuals with disabilities by curtailing the ability to protect these individuals from systemic problems causing abuse and neglect, such as insufficient staff and lack of staff oversight in the Texas “fight club” example. This bill restricts the civil and human rights of individuals with developmental disabilities.
Protection and Advocacy systems must continue to have the broadest authority possible to pursue administrative, legal (including class actions), and/or other appropriate remedies or approaches to ensure the protection of the rights of people with developmental disabilities. This broad authority is critical to protect and advocate the rights of individuals with developmental disabilities and to insure the well-being of many thousands of individuals with developmental and other disabilities.
My brother and I are legal co-guardians of our sister who has profound mental retardation. We certainly have the moral right to know if someone is claiming to represent her. We just want to make sure that it is clearly spelled out as our legal right.
While a class action lawsuit may sometimes be appropriate, we are the best ones to decide who (or what) can best represent our sister's well-being and rights.
Ferrisbva - I disagree profoundly with your arguments; you are giving readers the talking points of the service providers (including the ARCS), who have a vested financial in forcing the closure of state operated ICFs-MR. You do know that in the last ten years, NOT ONE CASE FILED BY P&As had to do with abuse or neglect! This is a vendor-driven, narcissistic Moses complex-ideology with a body count, which was identified as far back as the 1990s. As indentified by Dr. Strauss, deinstitutionalized people die at a significantly higher rate (leavers) than do stayers or their community living peers. People with multiple disabilties who need a centralized medical service delivery model can't thrive in a community where doctors appointments and that of other DD professionals can take months to obtain. Do you really want to subject fragile people to the community medical reality? It is, what it is. I just waited four months to see my primary care physician.
So please, Ferrisbva - save this stuff for the ARC and the other vendors. ICF-MR care is a medical model that works for people with profound disabilties, and it shouldn't be discarded or disregarded for a decentralized medical system that can't support them appropriately.
BTW - if the ICF-MR care is so inappropriate, how come the ARCS aren't screaming to close the private ICFs and other facilities? HMMMM. Let me guess? Private ICF and facility care is provided by vendors and that's okay. It's really just about the money.
theddnewsblog.blogspot.com; You saved my day again.
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