More on H.R. 1255 ... pro and con

I received a comment from a reader who completely disagrees with my post about HR 1255. H.R 1255 is a proposed bill that allows residents of Intermediate Care Facilities and their legal representatives to opt out of class action lawsuits that could result in the closure or downsizing of the facilities where they live. I have seen many of these arguments before and they still don't hold up under scrutiny:

[Click here to see the full comment. Excerpts from the comment are in red.]

"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."

H.R. 1255 does not exclude the use of class action lawsuits by Protection & Advocacy. HR 1255 applies only to federally-funded attorneys before a lawsuit is filed and only to facilities that are certified as Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) and funded by the federal government.

Protection & Advocacy may proceed with a class action on behalf of those who consent to being represented, after all residents are given a time-limited option to not participate. It does make it less likely, however, that a class action would proceed, if most of the residents of a facility and their legal representatives oppose closure and support the availability of services provided in that setting. It might also avoid some of the results of deinstitutionalization that have occurred in the past - increased deaths, abuse, and neglect in community settings of the extremely vulnerable citizens who have been moved from these facilities.

"...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..."

According to VOR:

...P&A has done (only) what is minimally required by law with regard to notice to residents and their legal guardians. Rule 23 does not require notice in class actions that seek injunctive relief, including class actions against ICFs/MR, in advance of or at the time of the filing of the suit. It requires notice to the class members only at the time of a settlement. These class action lawsuits also do not allow for class members to opt out.

Intervention is not an adequate option for legal guardians to the right to opt out. Intervention is not a matter of right and even when families discover in time that a suit is being brought and find the resources to seek intervention (a considerable burden), the request may be denied by the court (often on the grounds that the state is representing their interests). In addition, intervenors do not have the same rights as parties.

"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."

I agree that often the public and private systems designed to serve people with developmental disabilities do not serve them well. This includes the system that supports federally-funded advocates who claim to represent people with developmental disabilities, regardless of whether the advocates know anything about them personally or have ever met them. Families are the first line of defense in protecting their family members against neglect, abuse, and poor quality services, regardless of where their disabled family members live. It takes a unique blend of arrogance and ignorance to dismiss the relatives and guardians of people with developmental disabilities as gullible fools. To presume that federally-funded attorneys are better equipped to determine what is best for our family members is dangerous and insulting.

"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."

The abuse at Willowbrook took place 37 years ago, and as the commenter notes, there have been a lot of changes since then. One of the changes is that the federally-funded facilities, ICFs/MR, are more regulated and monitored than most group homes and other living arrangements in "community" settings. Better regulation and monitoring does not in itself guarantee better care. People with severe and profound mental retardation and severe behavior problems are vulnerable to abuse, neglect, and exploitation, not because of where they live, but because of their vulnerability. Preventing abuse, neglect, and exploitation takes vigilance by families, care providers, and public agencies as well as policies that allow a rapid response and resolution to these incidents.

No reasonable or compassionate person could condone the exploitation of people with disabilities for the amusement of their caretakers, as appears to have happened in Texas, any more than one should condone some of the horrific incidents in Michigan's community group homes, documented on the Adult Foster Care licensing website. But to advocate for eliminating any option that people with developmental disabilities rely on for their safety and security and for services appropriate to their needs, is a disservice to the people we claim to want to protect and advocate for.

"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."

Insufficient staff and a lack of oversight is a significant problem for people with developmental disabilities whether they live in community settings or in facilities, but opposition to H.R. 1255 does nothing to alleviate the problem.

H.R.1255 is fully consistent with disability policy: the Developmental Disabilities Act of 2000 says that "Individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options..."; the Supreme Court Olmstead decision states that there is "no federal requirement that community-based treatment be imposed on patients who do not desire it...". To say that it will jeopardize the well-being of thousands of people with disabilities is over-blown and deceptive hyperbole.