The following is a letter sent to Kevin Casey, director of the Division of Developmental Disabilities in the Illinois Department of Human Services, by Rita Burke and Wayne Ryerson, members of the Jacksonville Developmental Center Closure Advisory Committee. Burke is also the President of the Illinois League of Advocates for the Developmentally Disabled, a statewide advocacy organization and VOR-affiliate representing residents of Illinois’ state-operated developmental centers (ICFs/MR) and their families.
December 10, 2012
Dear Director Casey,
As members of the Jacksonville Developmental Center Closure Advisory Committee, we were notified by email on December 3rd that the December 12, 2012 meeting was cancelled due to "scheduling conflicts." As of today, we have not been notified of a rescheduled date.
This is alarming to us because since our last meeting, JDC was emptied and we have been informed that as many as 30 JDC residents were moved wholesale out of the facility to other SODCs as a temporary measure in order to close JDC by an arbitrarily determined date. This is certainly not on the person-centered timeline you promised.
Read full letter
October 23, 2012
Some families and friends of Lanterman Developmental Center residents in Pomona, California have called on the California legislature to halt transitions from the center, which is in the process of closing. Citing broken promises by the State to assure quality of care for their family members upon transition, a number of mortalities, and lack of information about the welfare of 140 residents who have already transferred, 117 Lanterman families and friends have called on legislators to halt transfers, except for those families who choose to proceed with their child's transition.
"Two years of unproductive negotiations, empty promises and broken commitments are enough," says the October 23, 2012 letter signed by 117 Lanterman Developmental Center families and friends. "Families and advocates of Lanterman residents plead with legislators to call for a moratorium on placements out of Lanterman Developmental Center, until all health and safety concerns have been addressed."
Read the families' letter here.
March 13, 2012
In response to the troubling report by California Watch, please listen to the families. They will implore a “fix it, don’t close it” response.
As noted in the Senate Human Services Committee background paper, the 1,800 individuals with ID/DD who reside in California’s Developmental Centers are among the most vulnerable California citizens. The vast majority have severe to profound ID/DD, in addition to complex medical conditions and physical disabilities, or dangerous behavioral challenges.
Families of developmental center residents follow a moral charge to do what is best for their loved ones. Their family members are like small children, and absent evidence to the contrary, the law presumes that parents and family members of minor children and intellectual disabled adults, will act in the best interest of their loved ones:
“Individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families.” DD Act, 42 U.S.C. 15001(c)(3)(1993) (Findings, Purposes and Policies) (emphasis added).
We would no more tell parents of minor children where they should seek professional health care and educational supports than we should dictate or judge the care and support decisions of parents of adult children of individuals whose cognitive abilities equate to that of infants and small children.
Read complete testimony here.
In response to a request by the Department of Justice for an additional $1.5 million and 50 positions (including 25 attorneys) for the Civil Rights Division, VOR submitted written testimony to “protect the interests of the residents of ICFs/DD and their families to be the primary decision-makers regarding where they reside” and pointed to abuses in several states where DOJ attorneys did not consult with families prior to taking action and sought closure of facilities contrary to the residents’ choice and welfare.
Specifically, “in response to the blatant and repeated disregard of the ADA requirement for individual choice of residency by the DOJ’s Civil Rights Division,” VOR asked Senate and House appropriators to include the following language in the DOJ Civil Rights Division appropriations:
(1) In any action taken by the Department of Justice, including investigations, that involves the residents of an ICF/ID, DOJ shall consult with the residents (or, if a resident has a legal representative, the resident's legal representative) and families among all other interested parties before taking action.
(2) If, after taking action, families wish to intervene on behalf of their family member with ID/DD in the DOJ action, DOJ is encouraged to support such intervention.
VOR’s testimony will be part of the Senate and House Subcommittees’ report on the hearings.
Read VOR's Senate and House Testimony here.
TO: American Bar Association Commission on Law and Aging
RE: RECENT EFFORTS TO DILUTE THE RIGHTS OF LEGAL GUARDIANS OF PERSONS WITH PROFOUND DEVELOPMENTAL DISABILITIES.
DATE: January 14, 2009
I represent VOR, a national advocacy organization representing people with developmental disabilities, and their families.
Nearly all of our members have family members with severe and profound mental retardation and related developmental disabilities. Our loved ones need substantial support in every aspect of life including walking, communicating, bathing, eating and toileting. They function at an infant or toddler’s level although fully grown; they also endure multiple disabilities, chronic medical conditions and/or behavioral challenges. Many also have seizure disorders, mental illness, visual or hearing impairments, or have a combination of these conditions.
In most cases, our loved ones and their peers have been adjudicated incompetent and a legal guardian has been appointed for them, usually a parent or close relative.
We have a serious concern which falls within the Commission’s work on legal issues relating to “capacity, guardianship and surrogate decision-making,” as well as within “disability and individual rights.”