Urge your representative to co-sponsor H.R. 2032 - help preserve choice of care for the severely disabled

Federal legislation designed to protect the rights of people with profound intellectual and/or developmental disabilites was introduced on May 26, 2011 by U.S. Representatives Barney Frank (D-MA), Bob Goodlatte (R-VA) and Debbie Wasserman Schultz (D-FL). Rep. Bob Filner (D-CA51) was one of the original co-sponsors.

The bill follows up on last year's efforts to pass H.R. 1255, which would have required that before federally-financed class action lawsuite against Medicaid-certified and funded intermediate care facilities for people with mental retardation (ICFs/MR) can proceed, residents and their legal representatives must receive notice of the proposed class action and be given a time-limited opportunity to opt out of the lawsuit.

H.R. 1255 garnered broad bipartisan support with 90 co-sponsors.

According to the letter circulated by the authors of the new bill to House colleagues, H.R. 2032 provides the same protections in class actions.

Furthermore (from the letter):

"It (H.R. 2032/the new bill) will also address similar actions by the Department of Justice (DOJ) that affect the choice of residency for our most vulnerable citizens. It does so by requiring DOJ to consult with the residents and their legal representatives in any DOJ action involving ICFs/MR and, when a lawsuit is filled, provide for a right of intervention for residents or, where appointed, their legal representatives.

"Passage of this bill is desperately needed to make sure that the residents of ICFs/MR and their legal guardians play a key role in the decision-making process as to where they choose to live from the widest possible array of choices. Too often federally-funded class action lawsuits have been filed, not with the purpose of ensuring that ICF/MR homes are providing quality care but in support of an ideological agenda that opposes ICF/MR care. The results have been unneessary deaths and abuse, as documented in studies and articles in major newspapers across the country.

"Many of the residents of ICFs/MR operate on a cognitive level of an infant or toddler and no one would question the rights of parents to make fundamental health care decisions on behalf of a one year old. This legislation respects the role of court appointed legal guardians, often close relatives or parents of the affected residents."

In urging representatives to join in co-sponsoring the bill, VOR eleborated on the concerns over DOJ actions in recent years.

"Since 2009, the Department (of Justice) has issued investigative reports, filed suits or presented briefs in cases alleging violations of the Americans with Disabilities Act (ADA), seeking or agreeing to settlements that would reduce significantly the population of or close all ICFs/MR in Virginia, Georgia, Arkansas, Pennsylvania, New Jersey, and Illinois.

"Like the federally-funded class action lawsuits which target ICFs/MR, DOJ actions have typically been taken without consulting affected residents or their families and legal representatives. Instead, DOJ attorneys are substituting their judgment with regard to ICF/MR living without any regard to the opinion of the affected residents, their failies or guardians. These DOJ lawsuits are inconsistent with the ADA and the Supremem Court decision interpreting it, Olmstead v. L.C., 119 s. Ct. 2176 (1999), which do not madate ICF/MR closures, but seek a balance between encouraging community integration and preservation of facility-based care for those who require or choose the comprehensive services offered at ICFs/MR. As Justice Ginsburg wrote for the majority, 'We emphasize that nothing in the ADA 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.' (Id. at 2187)."

If you have concerns about the rights of the severely developmentally disabled and the future of developmental center care, join us in asking your U.S. representative to co-sponsor this critical piece of legislation. To refresh your memory on who you need to contact, visit www.govtrack.us to find the appropriate person -- and then tell them to contact Pilar Falo, Legislative Counsel to Rep. Barney Frank, at 5-5931 and add their name to the list of co-sponsors.

If you would like to write to Parent Hospital Associaion (PHA) and let us know you support H.R. 2032, we would appreciate your feedback. You can contact us by email [info@parenthospitalassociation.org], post a comment on the Parent Hospital Association Facebook page, find us on Twitter, or (gasp!) write to us at PO Box 122, Eldridge, CA 95431-0122. We look forward to hearing from you.