Response to NWA Democrat Gazette Editorial "Handle with care; Mend these institutions, don't end them"

The Arkansas Waiver Association, an association of advocates, persons with developmental disabilities, their families and professionals who promote the provision of quality, integrated supports within a community-based setting, would like to respond to the recent editorial, Handle with care; Mend these institutions, don’t end them, in which it was recommended that the “whole picture” be looked at during any discussions about the future of Human Development Centers in general, and the Booneville HDC in particular. Unfortunately, the editorial failed to heed its own advice, and did little to inform the debate on the issue.

The piece began with the presumption that many of the country’s institutions for individuals with intellectual and development disabilities are being shut down for reasons that “don’t make sense on closer inspection”. One example was penny wise but pound foolish economizing. A closer inspection would find that many closures were both penny and pound wise. Given their fiscal constraints, it has become increasingly difficult for states to justify the high cost of institutionally based care, especially when so many other individuals with similar needs are unable to access any services or supports. It was also noted that institutions in some states have been closed as a result of lawsuits. This is true. In some of those cases, the closure was ordered because of the horrendous conditions, and the instances of abuse and neglect, within the institution. 

Further stating that institutions have been closed as the result of court decisions grossly mischaracterizes the reality of those decisions. The U.S. Supreme Court’s ruling in the Olmstead v, L.C.  case held, among other things, that “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life” and “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.” The Court also stated, “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.”

In accordance with this jurisprudence, courts have not ordered the closure of institutions, but have required states to increase the availability of community-based treatment options for any residents who want to transition out of an institution, or for those individuals at risk of institutionalization who wish to remain in their community. The result of such court orders is that many institutionalized individuals have chosen to transition from an institution to a community-based setting. As institutional populations decreased, many states have chosen to downsize, consolidate or close their institutions. In such circumstance, to insinuate that such orders were issued by a court that was “inclined to act thoughtlessly” is insulting and disrespectful to the court that was following the rule of law. 

Equally outrageous was the speculation that if a Human Development Center in Arkansas was closed, the residents would be in great danger of being left to fend for themselves, potentially winding up on the streets or sleeping on grates. The statement reflects an appalling lack of knowledge about Arkansas’ current system of care for the intellectually and developmentally disabled, and is highly insulting to the Superintendents and staff at the HDC’s, the entire Division of Developmental Disabilities, and the professionals and families represented by the AWA. When residents transition out of an HDC, as they frequently do, they are not escorted to the front gate and left to fend for themselves. The resident is placed in one of the programs administered by the State that furnish community-based services and supports to individuals with disabilities. The individual winds up sleeping in the family home, a private residence or a group home. Regardless of the setting, the services and supports provided the individual are designed to ensure their health and safety, which includes personal care staff when they go out on the streets of their new community. No one gets abandoned; they get supported.

For far too long, the debate about the State’s overreliance, relative to most other states, on institutions to serve individuals with disabilities has focused on whether or not the quality of care is better and/or cheaper when provided in an HDC versus a community-based setting. The AWA agrees with the Stephen Group that, in general, the quality of care provided in the HDC’s is very good. The AWA also believes that, in general, the quality of care available in a home and community based program is equally as good. Neither setting is inherently better able to furnish quality care. In all cases, the quality of care provided reflects the skill, training and supervision of the people furnishing the care. Likewise, one setting is not inherently less expensive than the other. Both HDC’s and community-based providers are capable of meeting the needs of Arkansans with intellectual and developmental disabilities.

If this is the case, then why is there an ongoing debate? As suggested in the editorial, we need to look at the whole picture. In the words of Dirk Wasano, an individual with disabilities, "In the 1960’s and earlier we were treated like plants. You fed us, clothed us, kept us warm, and wheeled us out to feel the sun. In the 1970s and 80s you discovered we could be taught—we could learn—and we were treated like pets. You taught us all types of tricks and we stood by your side. But now . . . Here we are. We are not plants. We are not your pets. We are people like you and we want to be treated as real people. We want the same opportunities as anybody". 

What We the People of Arkansas should be focusing on is choice. An individual with a disability is entitled to full inclusion within their community, with all of the privileges and opportunities to determine, and achieve, the goals in life that are uniquely theirs, just like every other citizen of Arkansas is entitled to receive. It is not the prerogative of the State, family members, guardians or anyone else to decide what someone else’s quality of life goals should be. Regardless of a person’s cognitive level, they should be afforded as much control, or choice, over their own lives as is possible. To do this, we must do more in the way of truly asking people what is important to them. We must encourage them to become fully included in their own community. We recognize that, for many individuals, an institution is the only community they have ever known. If it is truly their choice to remain in an HDC, we should respect their choice. 

The moral of the editorial was that we should look before we leap. To the extent that We, the Nondisabled, People of Arkansas, believe that we should have the right to choose the community in which we live, and how we want to live our lives, we must take whatever steps are necessary to ensure that intellectually and developmental disabled Arkansans are given the same rights and opportunities. HDC’s may be an important component in the continuum of care, but with thousands of Arkansans on a wait list to receive services or supports within their communities, simply maintaining the status quo cannot be justified. Having thoughtfully looked at, and considered, all of the issues, we judiciously conclude that now is the time for Arkansas to take the leap that boldly moves the State into the 21st Century.