Speaking out for People with
 Intellectual and Developmental Disabilities


Diluting Guardianship Rights

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.” 

Check With Families Before Evicting Retarded Residents

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.

The Wrong Solution

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." 

Mother sees compassionate care at Glenwood

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.