Illinois: Illinois League of Advocates for the Developmentally Disabled (2006)
Review of Equip for Equality , Illinois’ Protection and Advocacy Agency
by Rita Burke, President
Illinois League of Advocates for the Developmentally Disabled (IL-ADD)
IL-ADD’s membership is composed of the presidents or other representatives from the parent/guardian organizations from all nine of Illinois’ State Operated Developmental Centers (SODCs)
Equip for Equality is a state appointed agency receiving Federal funding which is intended to advance the causes of all Illinois citizens with disabilities. This agency should be even-handedly supporting and advocating for all disability needs and embracing a full continuum of appropriate services. It does not.
Equip for Equality is unapologetically biased against state operated developmental centers (SODCs), which serve individuals with the most extreme needs, many of whom have severe medical conditions and/or extreme behavior disorders, who would be at highly increased risk of isolation, over-medication, imprisonment and even death if forced from their SODCs to “community” settings.
Parents and family members of these high risk individuals do NOT believe, nor should they, that EFE is their advocate. On the contrary, they feel threatened, as well they should, by EFE, and are alarmed that this agency’s anti-SODC agenda is empowered by Federal funding, our own tax dollars, put to work to the detriment of our children and family members. With the help of federal funding, this state’s most vulnerable people with developmental disabilities are at risk of becoming human casualties to the blind, narrow, rigid agenda of EFE that takes precedence over and disregards reality, Supreme Court protections under Olmstead, and simple, ordinary compassion.
This agency should not receive federal funding which in their hands can and will be used to inflict harm upon our children and family members.
Reality must prevail over ideology. Reality cries out from the stories of real people, our family members and loved ones, who have been underserved, overmedicated, injured, abandoned, imprisoned, and in some cases, allowed to die, when the community failed because it was unequal to the task demanded by these high-needs people. While enjoying the designation, “community,” inadequate private settings have been isolating, limiting the opportunities, experiences, and freedom of residents. While maligned as “archaic institutions” by EFE, and their “community only” affiliates, our SODCs have provided the least restrictive environments to our family members with employment, recreation, and worship opportunities available in a campus community environment and with staffing levels that make successful and safe interaction with the outlying community not only a possibility, but a reality.
EFE does not let reality get in the way of their anti-SODC agenda which they have made clear in every forum we have observed. They have used their website to call for the closure of “institutions.” They have become a member of coalitions with vehemently anti-“institutional” private organizations, which is highly inappropriate for a federally funded agency, purportedly representing all of our interests. But it is their purposeful misrepresentation of the Supreme Court decision in Olmstead that most clearly shows their hand. In June 2004, EFE released a report (signed onto by 13 of their coalition associates) which chastised Governor Rod Blagojevich for his alleged failure to comply with Olmstead, which they stated, “directs states to move their disabled population from institutional to community-based settings.” But a half truth is a complete lie, and one which EFE nurtured and perpetuated, by refusing to acknowledge that the Supreme Court in Olmstead protects individuals who need and choose institutional care. In 2000, as participants in Olmstead committee work groups, EFE voted against our attempt to include majority opinion Olmstead language which protects individuals in need of institutional care.
Among the Olmstead language they voted to exclude:
“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.”(119S.CT. 2176, 2187)
“As already observed ©by the majorityª the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk.” (119 S.Ct. 2176 2189 (1999) (plurality).
The Supreme Court in Olmstead has protected the rights of our family members to have appropriate services and has reinforced the rights of individuals with developmental disabilities, and their parents and guardians, to choose the residential setting that is best for that person. But EFE has second guessed the decisions of those who choose SODCs. In EFE’s “Segregation and Community Integration,” EFE disparages the choice of SODCs by parents who, they suggest, are too old, unenlightened and fearful to see things the way they do. We need not be too insulted by their disdain, however, since they have placed us in good company:
“In addition to opposition from some parents/guardians of individuals living in institutions, the opposition to institutional closure has come most often from employees (both union and non-union), community business interests, politicians and legislators representing districts where institutions are located.”(Segregation and Community Integration EFE 2004)
They also admonished the Governor and Department of Human Services to close institutional settings, and by so doing, dismissed those two annoying pests, appropriateness and choice.
In the same report, EFE proposed a way to get around choice of SODCs by forcing closures through litigation:
“Litigation has played a role in almost all the states where deinstitutionalization has occurred, often providing the initial impetus for closing or downsizing institutions.”
(Segregation and Community Integration EFE 2004)
Frighteningly, federal dollars will be invested in this effort.
In May 2005, further demonstrating their abhorrence of anything outside their agenda, EFE resigned from the Disability Services Advisory Committee, which was legislatively formed and to which they were appointed by Governor Blagojevich to serve and to work out a state plan with other appointees representing a wide range of disability needs. EFE’s letter of resignation states that they will use their “limited resources [that is, “federal” resources] on other methods to obtain the State’s compliance with the implementation of the Supreme Court’s decision in Olmstead.”[that is, the part of Olmstead that EFE would vote in, not the part where EFE second guesses the majority of the Supreme Court and would vote out].
When immutable ideology seeks closure of “institutional settings” and drives the federally funded protection and advocacy agency from the discussion table, how can SODC parents and family members feel one iota of comfort that we and our loved one are represented.
Conclusion
Federal funding is a powerful tool, which in the hands of ideologues, can unduly influence policy makers to make decisions which disenfranchise the rights of our children and family members who reside in well-run state operated facilities. We fear that this is already happening in Illinois due to the federal funding provided to Equip for Equality. Federal funding should not be granted to agencies that fail to represent and protect the most vulnerable people with developmental disabilities, our children and family members.
