|
|
|
Abuse of DD Act Programs' Powers & Resources |
|
|
February 26, 2008
MISUSE OF DD ACT PROGRAMS’ POWERS & RESOURCES
Summary of Concerns/Objections to Activities of Programs Funded Under the Developmental Disabilities Assistance & Bill of Rights Act of 2000 (Public Law 106-402) (“DD Act”)
Prepared by Voice of Retarded (VOR) Task Force on Developmental Disabilities Assistance & Bill of Rights Act of 2000
“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.
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.”
Rita Burke, President of IL League of Advocates for the Developmentally Disabled Regarding the Developmental Disabilities Assistance & Bill of Rights Act 2000 (See www.Vor.net/ILTestimonial) Excerpts - Letters from families re: DD Act programs
“The advocacy center [FL Protection & Advocacy Program] here in Florida has operated without consulting parents and families. They have pursued policies that they have determined will benefit all of us, without asking what we would like to see happen for our loved ones. They have used our money, Federal funding, to work against us. Even once our opinions have been made known to them, they have dismissed them as unimportant.
There are numerous cases in Florida where the majority of families have asked the Center to stop what they are doing, and it totally ignores the wishes of those they are charged with assisting.
One case currently is Brown v Bush, where the Center petitioned the Federal Court to close the DSI [FL state-operated Intermediate Care Facility for persons with Mental Retardation] on the west coast, near Fort Myers called Gulfcoast Community Center. The overwhelming percentage of parents and guardians want to keep this fine residential campus open, but the Center has ignored the wishes of those served there and demanded closure.
It is frustrating and infuriating to see a federal agency behave this way, using our funds to fight us, after they know what we want is 180 degrees away from the policies they are pursuing.
Please stop this abuse now. Many other families in other states have suffered through the same experiences.”
Leni and David Engels Hollywood, Florida Parents of M. Jordan (1982 - 2005) Letter of August, 2007 to VOR Task Force On DD Act
“I strongly disagree with the agenda of the MDLC [MD Protection & Advocacy Program] – close Residential Centers. I find it outrageous that these agencies receive Federal dollars to promote an agenda that is not supported by MANY taxpaying citizens. These agencies do not represent my daughter and her rights to continue to receive care in the most appropriate setting – Holly Center.”
Mary Lou Chandler Salisbury, Maryland Testimony for Public Forum Administration on Developmental Disabilities July 10, 2006
“Concerning the DD Council DRAFT 2007-2011 State Plan….I have a toddler-aged adult with challenging behaviors……I would certainly like some support from organizations like the DDC [WA Council on Developmental Disabilities Program] . But I see nothing in your plan that includes people like Eric. Why did you leave him out? Why are the RHC [WA Intermediate Care Facilities for Persons with Mental Retardation] parent groups not mentioned in your identified parent coalitions and collaborators? And why is there no mention of an RHC as a choice?”
Paul Strand, Father of Eric Comments on WA DD Council State Plan (p. xi 2007 – 2011 WA DDC State Plan)
“Families of ICF/MR [Intermediate Care Facilities for Persons with Mental Retardation] residents cannot meet the challenges brought by P&A [Protection & Advocacy Program] suits without incurring enormous financial burdens. The well-funded, unchecked ability of P&A groups to bring and settle “systems-change” lawsuits (at taxpayer expense) places them in powerful positions which cannot be matched by families/guardians on the basis of costs and financial burden.”
William F. Sherman, Attorney at Law Father of John Little Rock, Arkansas (See www.Vor.net/ARTestimonial/ )
“The opposition [to publicly-operated Intermediate Care Facilities for Persons with Mental Retardation] is relentless.”* Mark Engberg, Brother of Beth (8/12/1968 – 11/13/2004) Salisbury, Maryland Message to VOR Task Force on DD Act October 30, 2007* (*“The Governor announced yesterday that Rosewood Center [a state-operated ICF/MR] will close ...”)
Note: For Additional Family Testimonials, See: www.Vor.net/ARTestimonal/) Table of Contents
Title Page
Excerpts - Letters from families P. 2, 3
List of Exhibits P. 5
Summary Tables P. 6, 7
I. Protection and Advocacy Programs
Funded under “Subtitle C” of Developmental Disabilities Assistance & Bill of Rights Act 2000
(Each state has a Protection and Advocacy Program).
Summary………………………………………………… P. 8 Reports from States …………………………………. P. 9 - 29
II. State Councils on Developmental Disabilities
Funded under “Subtitle B” of Developmental Disabilities Assistance & Bill of Rights Act 2000
(Each state has a Council on Developmental Disabilities Program).
Summary………………………………………………… P. 30 Reports from States………………………………….. P. 31 - 41
III. National Network of University Centers for Excellence in Developmental Disabilities Education, Research and Service
Funded under “Subtitle D” of Developmental Disabilities Assistance & Bill of Rights Act 2000
(40 states have one University Center for Excellence in Developmental Disabilities Education, Research and Service Program).
(11 states have more than one University Center for Excellence in Developmental Disabilities Education, Research and Service Program).
Summary………………………………………………… P. 42 Reports from States………………………………….. P. 42 - 50 Exhibits
Exhibit A …………………………………………… State of Pennsylvania – Statement of P&A Program Priorities (3 pages) Year 2006
Exhibit B …………………………………………….. State of Utah - Letter report to UT Lt. Gov. G. Herbert from Mary Paulsen, mother of Phillip dated October 18, 2007
Exhibit C …………………………………………….. State of Missouri - DD Council Full Page Ad (1 page) in St. Louis, MO area newspapers Year 2007
Exhibit D…………………………………………….. State of Wisconsin - Letter from Chair WI CDD to Kevin Underwood, father of Aaron, dated March,
Exhibit E…………………………………………….. State of Texas – Handouts at “Disability Policy Consortium” (2 pages) November, 2007
Exhibit F…………………………………………….. (1) National Association of Councils on Developmental Disabilities (NACDD) - Collaborator
(2) State of Minnesota – UCEDD Program - Collaborator
Two Pages (Title page and Page Four) from “Community for All” Tool Kit” (67 pages)
(http://thechp.syr.edu/toolkit/ )
Inappropriate Activity Examples Summarized in this Document
* Examples are drawn from only 14 states. In future, this document may be amended to reflect examples in other states.
I. Protection & Advocacy (“P&A”) Programs
> Funded under “Subtitle C” of the Developmental Disabilities Assistance & Bill of Rights Act of 2000
> Each state has a Protection and Advocacy Program
Documented Examples
The Table on page seven shows a total of 14 different types of inappropriate activities conducted by Protection & Advocacy (P&A) Programs. Sixty-three specific examples are provided here.
Documented Reports from the States re: Protection & Advocacy (“P&A”) Programs
Arkansas California Florida Illinois Kentucky Maryland Ohio Pennsylvania Texas Utah Washington Wisconsin Re: Protection & Advocacy (“P&A”) Programs
Item 1. Some P&A programs testify against state-operated facilities for persons with mental retardation before policy making bodies
STATE INAPPROPRIATE ACTIVITY
AR P&A testified against adequate funds for Arkansas’ developmental centers before legislative budget special language committee. (2003 Legislative Session)
FL P&A testified against Senate Bill No. 402, which, if passed, would require that (1) closure of state-operated developmental center decisions would be made by the Florida Cabinet and (2) Florida would formally include family input prior to closing a facility for persons with mental retardation.
Testified against companion House bill (Senate # 402) (5 Hearings - 2007)
MD P&A testified before the state legislature against the option of ICF/MR care. (February, 2006)*
(See P. 10 VOR position paper “The Need for Immediate Reforms www.vor.net/DDAct2007.htm )
joined with four organizations in submitting testimony at MD Senate Budget & Taxation Committee and House Ways and Means Committee. The groups’ written testimony calls for closure of Rosewood Center and shifting the center’s funds to “people in need on the waiting list.” (October 30, 2007)*
* The Governor of Maryland announced the
closure of Rosewood Center January 15, 2008. Re: Protection & Advocacy (“P&A”) Programs
Item 1. Cont’d
STATE INAPPROPRIATE ACTIVITY
Utah P&A called for closure of Utah Developmental Center before a legislative task force on Medicaid.
“_____ _________, director of the Disability Law Center . . .asked the task force to explore selling the center and putting the profits in a trust fund to pay for less expensive care options, such as group homes…. Institutionalized care is “outmoded.’”
(Salt Lake Tribune - August 1, 2006)
Re: Protection & Advocacy (“P&A”) Programs
Item 2. Some P&A programs undermine state-operated centers in media
STATE INAPPROPRIATE ACTIVITY
KY P&A undermined proposal to place additional, smaller ICFs/MR units on the campus of Hazelwood Center. Director of KY P&A stated: “By clustering the smaller boxes with the bigger box, in a sort of disability ghetto, if you will….We oppose this proposal.”
(Louisville Courier-Journal May, 2007)
MD P&A undermined a licensed ICF/MR - Rosewood Center (Baltimore Sun - November, 2006).
The Governor of Maryland announced the closure of Rosewood Center January 15, 2008.
MD P&A undermined choice of facility-based care.
“The truth is that institutional care is an outdated service model.”
(MD P&A Public policy director Baltimore Sun – November, 2006)
TX P&A undermined option of facility-based care in a special article to Houston Chronicle.
Executive Director: “It doesn’t make sense to continue pouring precious dollars into an archaic system that isolates people based on disability labels and some unfortunate stereotypes and assumptions.”
(___________, Executive Director August 27, 2007, in a special article to Houston Chronicle)
Re: Protection & Advocacy (“P&A”) Programs
Item 3. Some P&A programs provide paid leadership for “workgroups,” “committees,” “stakeholders,” coalitions,” “consortiums” with goals of closing state-operated ICFs/MR
STATE INAPPROPRIATE ACTIVITY
MD P&A serves on “Close Rosewood Coalition.” Provided meeting room for “Close Rosewood Coalition” meeting December 6, 2006.
(Cross Disability Rights Coalition e-message December, 2006, available upon request)
The Governor of Maryland announced the closure of Rosewood Center January 15, 2008.
OH P&A serves on numerous policy-influencing committees in state government providing biased influence against the option of ICF/MR services.
(See P. 1. www.VOR.net/OHTestimonial.htm)
PA P&A Ex. Dir. served as Chairman of a committee formed to |
