November 13, 2012
Please accept these comments in response to the emergency regulations issued by the Department of Developmental Services (DDS) regarding eligibility of DDS clients for services at 115 CMR 1.02, 115 CMR 2.01 and 115 CMR 6.02, which became effective September 26, 2012.
We are specifically concerned about 115 CMR 1.02 which reads:
The Department [of Developmental Services] is the clinical authority that determines the presence or absence of intellectual disability using the standard set forth at page 5 in the 11th edition of the American Association on Intellectual and Developmental Disabilities
We share the concerns expressed by our statewide affiliate COFAR, our affiliate CCMR, families of individuals with I/DD, and others who uniformly express concern about these proposed regulations.
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VOR joins the chorus of heartfelt sympathy expressed for the families and friends of the victims of the Sandy Hook tragedy.
With so much “politics” (you name the issue) dividing our country, VOR prays that this tragedy finally unites parents, families, advocates, professionals, organizations, and policymakers in a way never before experienced.
There can be no real justice for the senseless killings in Connecticut and elsewhere, but uniting as a nation will get as close to healing as possible and will help prevent such senseless tragedy in the future.
As the President stated,
“’We can't tolerate this anymore,’ he added. ‘These tragedies must end, and to end them, we must change. We will be told that the causes of such violence are complex, and it is true. No single law, no set of laws can eliminate evil from the world or prevent every senseless act of violence in our society. But that can't be an excuse for inaction. Surely we can do better than this.’”
VOR agrees and central to necessary change is disability policy and mental health reform.
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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.
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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.