The Arc of Washington State recently posted an Action Alert at http://capwiz.com/arcwa/state/main/?state=WA where we encourage you to call and email your congressional leaders.
Here is the summary written by the Congressional Research Service for HR 1255:
"Prohibits any entity that receives funds from the federal government from using them to file a class action lawsuit against an intermediate care facility for the mentally retarded on behalf of any facility resident unless the resident (or the resident's legal representative), after receiving notice of the proposed class action lawsuit, has the opportunity to elect not to have the action apply to the resident."
The National Disability Rights Network (NDRN) opposes this bill and is also encouraging people to contact congressional leaders and ask them to oppose it. The bill is the same one that was brought forward in 2007 (HR 3995) and it died in committee then.
On the surface, this bill would appear to be protecting the individual with a developmental disability. In reality, this bill would greatly limit the ability of protection and advocacy agencies to bring class action lawsuits regarding institutions for people with developmental disabilities. It would allow guardians and other representatives to “opt out” a resident from a class action.
The best interest of the individual with a developmental disability is not always served by the guardian, particularly when some attorneys make money by being the paid guardian for 20, 30 or more people living in institutions. It is less work for these paid guardians to keep their clients in an institution than to have to oversee services provided in the community.
The 2009 Facilities Closure report (one of many) commissioned by our legislature recommended that Washington close all but a few RHC beds by 2019 and convert Lakeland, Fircrest, and Yakima Valley into three small community support centers. Each center would have clinical expertise to support people with autism and their families. These three centers would also retain a small number of beds to honor the state’s commitment to allow people and their families to age-in-place.
The Olmstead Decision in 1999 affirmed the right of individuals with disabilities to live in their community and not be required to live in institutional settings. The 'integration mandate' of the Americans with Disabilities Act requires public agencies to provide services "in the most integrated setting appropriate to the needs of qualified individuals with disabilities." It is a violation of an individual’s civil rights to institutionalize them because it is easier for the guardian. We must look at what is the least restrictive environment that allows individuals to participate in community activities, be employed and be provided the freedom and opportunities that every other Washingtonian enjoys.
Advocating for full community participation for all,
Diana Stadden
As a follow-up:
I received this clarification from NDRN staffer Eric Beuhlmann responding to the Developmental Disabilities blog criticizing the above blog entry:
“Where the legislation clearly restricts the choice of the individuals with disabilities is where their choice differs from their legal representative. Because the definition of legal representative is pretty broad, it can cover situations where the individual is capable of making their own decisions, but because of the legislation that choice will be overridden by the choice of the legal representative to opt out.”
Additional follow-up:
A letter of opposition to HR 1255 was sent to Barney Frank and signed by organizations of the Consortium for Citizens with Disabilities (CCD). This letter is posted on The Arc of Washington's web site at http://www.arcwa.org/news_events.htm
August 19, 20101 update:
ABA passes resolution opposing Barney Frank’s HB 1255
On August 10, 2010 American Bar Association (ABA) House of Delegates approved a resolution creating a policy in support of the national protection and advocacy system at the ABA Annual Conference in San Francisco, CA. Specifically, their new policy “supports the reauthorization, funding and authority of the Protection and Advocacy System (P&A) and related programs of legally based advocacy services protecting the rights of persons with disabilities and opposes legislation that would place limits on class actions on behalf of persons with disabilities beyond what is required under the Federal Rules of Civil Procedure.” DisAbility Rights Washington is the Governor designated protection and advocacy system for Washington state.
The resolution is considered timely by disability rights activists because Rep. Barney Frank is currently sponsoring House Bill 1255 which would place a limit on class action lawsuits brought by P&A agencies. HB 1255 is supported by the Voice of the Retarded and other advocates in favor of maintaining large institutional setting for people with developmental disabilities. For more information regarding Rep. Barney Frank’s bill follow the first link below. For more information regarding the ABA House of Delegates follow the second link.
http://www.abanet.org/leadership/house/home.html
Oh my, I'm astonished by these comments! I do not understand why some are so adamant about getting everyone out of "institutions". It is critical that people realize that integration is individual and I, for one, do not want others deciding what is best for our son.
ReplyDeleteWho says that institutionalization is just for the ease of the guardian?
Actually, the Omstead Decision affirmed the right of the individual to live in the setting that best suits them - be it a private home, group home, institution - it does not say that anybody is required to live in a specific place.
Inclusion is Continuum of Care - it is based on interactions with people not the place of residence!
http://vor.net/legislative-voice/legislation/hr1255?q=
ReplyDeleteHi Diana,
Thank you for having published my comments about HR1255 of June 18. It must have seemed strange to find them beneath your April 22 post about the disability rights conference. What a gaff on my part! Here, I have transferred them to the HR1255 topic they belong with. Thanks!
HR1255 leaves intact the system of protection and advocacy which includes litigation against facilities for human rights violations.
The provisions of HR1255
1)Provide for notice to parents/guardians of a lawsuit in which their child/family member/ward is named among the complainants.
2)Protect the choice of legal representatives of people who live in residential habilitation centers in Washington State and similar residential centers throughout the country to opt out of such class action lawsuits.
This is especially important, given the strong opposition that is brought to bear by your agency and others with similar biases against the residential centers that so many of us feel provide the highest quality of life for our wards... who, in most cases, are also our loved ones.
Your references to civil rights and ease make it sound like we don't care about our family members/wards. Of course, we have fought for their rights to live there PRECISELY BECAUSE WE CARE SO MUCH!
http://vor.net/legislative-voice/legislation/hr1255?q=
Federal dollars-tied-to-rigorous audits have, over the years, raised the standards of care and have caused it to be necessary for residential centers to provide the same rights and choices that The Arc advocates for in "community" living. Only for this reason can I agree that it might be easier in some cases for parents/families/guardians to assure high quality care in an RHC than in some community situations.
Finally, a word about why I have quotes around "community." It is because of the fact that residential centers are community resources and no less part of the community-at-large than are college campuses where students often live in dorms. Further, just as neighborhoods are often communities, so are residential centers with many of the same amenities. And just as students living in dorms on campus and people living in neighborhoods also participate in the greater community, so it is with residents of residential centers for people with dd. They participate in their greater communities, too. But someone else, trying to differentiate between people with dd, living in residential centers and others not living in them, started using "community" for those who don't live in residential centers; so we have that non-inclusive use of the word, "community." I just use quotes when using the word in this very specialized way.
Now I must be off to pick up my sister from her RHC home.
Thanks, Diana for the forum. Even though we disagree, it is good to be able to see all the various points of view.
Saskia Davis,
Sister & Guardian of an RHC resident
Written on June 18, 2010, but posted beneath the wrong blog.
Hello, Diana,
ReplyDeleteI just discovered your new addition to your post. Thanks for checking with NDRN staffer, Eric Beuhlmann. Confusing as I find his statement that "Because the definition of legal representative is pretty broad, it can cover situations where the individual is capable of making their own decisions," it is good to see where his organization is coming from.
Here is the bill's language about that: "(c) Legal Representative Defined- In this section, the term `legal representative' means, with respect to a resident of an intermediate care facility for the mentally retarded, an individual who has been appointed under State law to be a legal guardian, conservator, or other representative for the resident and who is authorized under law to make decisions on behalf of the resident with respect to care and treatment of the resident in the facility."
My thoughts are twofold:
1. The court does not appoint guardians, conservators or other representatives to make decisions for people with "mental retardation" in cases in which the individuals are deemed capable of making their own decisions. The judicial system is charged with the responsibility of preventing such appointments.
2. Considering that there are a great many such legal representatives for people with "mental retardation" living in "community" situations, it seems quite likely to me that they, also, would want the right to opt-out on behalf of their children/wards if the case were that they were being named complainants in a lawsuit with which they disagreed. I don't know the level of disability of your son, but, suppose he was not capable of understanding the lawsuit or of exercising the best judgment on his own behalf and you, therefore, were authorized to make decisions for him: would you not want the right not to prevent his being named a complainant in a lawsuit that you believed to be against his best interests? I just assume you are saying "yes." Me, too.
Thanks again for the forum, Diana.
Saskia Davis, Guardian for an RHC resident.
6-21-2010
on behalf of Disability Rights Washington:
ReplyDeleteThe purpose of HR 1255 is not to protect the rights of people with disabilities living in institutions. Rather, it is designed to stop Protection and Advocacy systems (P&As) from bringing lawsuits that result in community placement of people who live in institutions.
In Washington State, and nationally, there is a fundamental disagreement concerning the rights of people with disabilities who live in institutions. Some believe that a state institution is the appropriate setting for many persons with disabilities, others believe that most or all who are currently in institutions can (and have a right to) live in a less restrictive and more integrated setting.
In our society, courts are the place where fundamental disagreements about rights are settled. Guardians and other legal representatives have an important role in this dispute – but they should not be the judges. HR 1255 makes the guardian the final arbiter in this basic disagreement about rights. In effect, HR 1255 makes guardians the judge with respect to any class action brought to assert the rights of institution residents.
There is a long history of class action litigation to address rights violations in institutions. Legal advocacy by the Protection and Advocacy (P&A) System has been used in institutional settings to ensure adequate staffing levels are met, required therapies and services are provided, humane living conditions exist, the right of community integration is followed, and to stop abuse and neglect.
Under current law, anyone who brings a class action lawsuit must conform to an established court process. Members of the class, either by themselves or through a guardian or other legal representative, can object to being included in the class. They can also object to the lawsuit, and in all cases the court has a “fairness hearing”. All class members are invited to attend this hearing, held for the purpose of taking testimony regarding whether or not a proposed settlement adequately protects the rights of the class members.
As is the case for anyone who brings a class action lawsuit, the P&A must successfully make their case to the satisfaction of a court of law. The evidence and arguments of the parties are considered by a judge, who applies the law to the facts.
HR 1255 change the rules for class action lawsuits – but only for those class actions brought by P&As in institutions for people with developmental disabilities. The apparent purpose of the bill is to allow guardians to block legal actions that result in institution residents moving to the community. The bill allows guardians and other legal representatives – on their own, without court approval – to “opt out” individuals from inclusion in the lawsuit. Under HR 1255, it does not matter how compelling the case is that an individual’s rights are violated – if the guardian or other legal representative disagrees, the individual is not part of the lawsuit.
Obviously, a guardian or legal representative has a duty to consider and respond to the concerns identified in a class action lawsuit. If the guardian does not agree with the lawsuit, s/he should have the opportunity to object. That is available in current law. However, HR 1255 gives guardians much more authority than they have in current law. In fact, HR 1255 in effect changes the role of the guardian to judge. HR 1255 makes the guardian the final and exclusive arbiter in these class action cases involving rights violations.
The guardian has an important role. However, the guardian should not be the exclusive decision-maker where there is a controversy over violation of the individual’s rights. That is for a judge.
more information can be found at http://www.disabilityrightswa.org/public-policy/what-is-hr1255
I still question it though. What this seems to be doing also is not allowing the guardian to act as a guardian but is giving that to someone who doesn't know the person. I believe that this type of action is discriminatory because it denies the rights of the guardian to act as a guardian which in turn takes away the rights of the person with disablities.
ReplyDeleteGuardians are there for a purpose - to advocate and do what's best for their client. They are the ones who know the person best (or should). When people talk about rights, choices, etc for people with disabilities, you also have to take into consideration the cognitive/functional level of that person. Are the choices that the person would make on his/her own safe and healthy? I know for a fact that our son's would not be. He has the maturity of a 2 year old and makes choices at that level. Sometimes, the ability to talk makes people believe that he can answer questions and make wise choices. Quite the opposite. He can say "look both ways before crossing the street" but he can't do it. He can say "Call 911, I know CPR" If someone heard him say that, they might believe him. I wouldn't want to put his life or anyone elses in his hands or choices.
Even now, people will ask him things - "are you poopy" he says "no" so they believe him without gettng close enough to smell it. They ask, "do you need to pee", he says "no" then 5 minutes later goes all over the floor, wetting himself and everything around him. People will say, "he didn't ask for anything to drink", thinking that since he can talk, he can request things that he needs. He doesn't. When he went to overnight camp once, he got so dehydrated that he ended up in the hospital. Since he didn't ask for something to drink, he didn't get anything.
These are just a few examples, albiet not super important, but they give a glimpse of why a guardian is extremely important. I know these little quirks and know what he says or doesn't say need to be looked at carefully. Even people who are around him often still can't get this through their heads. Someone who doesn't know our son, a judge for instance, could not make a good choice for Thomas by taking what he says as what he would like, needs or chooses.
Not only do we need to advocate for the rights of people with disabilities but in doing that we also need to support the guardians to do their job.