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.”
By Edward Carraway, Supporters for Residential Choices for the Developmentally Disabled
St. Petersburg Times, February 5, 2007
The names and numbers are familiar: 2164 W First St., 5820 Buckingham Road, 3255 Hemingway Blvd., 3700 Williams Drive, 100 Bayou Drive and 1621 NE Waldo Road.
These are the addresses of people's homes - hundreds of people. They all happen to be planned communities, homes to people with similar interests and needs. Some are retirement communities, and some are upscale living centers located by the water and golf courses.
The people whose homes are at those addresses also are Floridians who have profound mental retardation, have multiple physical disabilities, are medically fragile and/or experience significant behavioral challenges.
Like Florida seniors and others who embrace planned communities, residents of Florida's residential campuses for people with profound mental retardation - Gulf Coast Fort Myers, Sunland (Marianna) and Tachachale (Gainesville) - have safe and comfortable accommodations, with ample opportunity to socialize with peers and neighbors. They receive compassionate life-sustaining support from specialists and direct care staffers, some of whom have worked with residents for decades.
By Harry Yost
November 6, 2006
If history is any guide, the state's intention with regard to the future of Maryland's four residential centers for people with mental retardation and developmental disabilities is crystal clear. Closed admissions, a steady stream of transfers, aging residents and understaffing have led to ever-decreasing populations at the residential centers. Even S. Anthony McCann, the secretary of the state's Department of Health and Mental Hygiene, said at a recent political forum that Maryland law and the Supreme Court's Olmstead decision require the closing of all such institutions.
On the legal side of this issue, however, families know better, and apparently so does Mr. McCann's boss. In September, Gov. Robert L. Ehrlich Jr. said that Olmstead "did not dictate the closing of institutions. ... For a relatively few, the institution may be the appropriate place and the least-restrictive setting."
by Sybil Finken, VOR First Vice President
August 2, 2008
Des Moines Register
I am the mother of four children.
Son Zach lives near Chicago where he is the Executive News Editor of the Chicago Sun Times. Son Luke lives in Colorado where, following in his parents' footsteps, he is an educator.
My youngest, Carmen, will be a junior in high school this fall. She is an honor student, involved in many school and community activities. Carmen is well poised for a very bright future.
Son Seth’s achievements are also remarkable. We’ve nurtured Seth and continue to provide all we can to ensure his continued happiness. Seth is severely disabled. He suffered meningitis when he was 7 months old. Seth is deaf, blind, has profound mental retardation, is wheelchair bound, and has a seizure disorder. His home is Glenwood Resource Center (GRC.)
No one ever questions our decisions on behalf of Zach, Luke and Carmen. My husband Russ and I are not shy about taking some credit for the amazing people they have become. Yet, we are increasingly challenged about our care choices for Seth, especially in light of recent news stories about care at Glenwood.