No easy choices for disabled after big budget cuts
published: Friday, October 17, 2008
l First of two parts
By CHRISTOPHER TUFFLEY
christopher.tuffley@newssun.com
AVON PARK -- When State Representative Denise Grimsley was recently asked what the biggest issue facing the Legislature was, she replied, "Florida will again be faced with preparing a balanced budget with an unprecedented reduction in revenue."
This story illustrates that problem by following an abstract choice made in Tallahassee to the very real effects that choice is having on individuals all over the state.
Caught in the middle is the state agency charged with the responsibility of carrying out the Legislature's wishes.
In October 2004, the Agency for Persons With Disabilities separated from the Department of Children and Families to stand on its own. Before then it was known as the Developmental Disabilities Program.
According to its Web site, "The agency supports persons with developmental disabilities in living, learning, and working in their community."
The goal is to maximize self sufficiency and increase independence, while insuring individual well being and safety.
The agency serves people with a range of conditions that interfere with ability to function in everyday activities.
Chapter 393 of the Florida statutes define developmental disabilities as spina bifida, autism, cerebral palsy and mental retardation.
According to Melanie Etters, the agency's communications director, the agency has run a deficit every year of its existence. "As long as a service was deemed necessary (for a client)," she said, "the client got it regardless of whether or not the agency had the money."
There were no spending caps and the state was spending approximately $1 billion a year and reaching 31,000 clients. Another 17,000 were on waiting lists.
But the running deficits meant the agency was breaking the law.
In the spring of 2007, when the state began to feel the effect of falling tax revenue, the legislature mandated a new policy, beginning with a cutback in funding to about $880 million.
With the cutback came the concepts of spending caps and apportionment.
The Legislature had the agency create four new Medicaid developmental disability waivers -- actually tiers in an ascending system. The Legislature then established the criteria for each tier based on an individual's needed level of service, current living situation and other characteristics.
Three of the tiers are capped, meaning there are financial limits. Put simply, the fourth tier, or bottom tier, is for individuals who live at home with families and have moderate disabilities. Spending tops out at $14,792.
The third tier, for individuals with moderate disabilities and who live by themselves or in group homes, spending tops out at $35,000.
The second tier, for individuals with more complicated issues living in group homes, tops out at $55,000, and the first tier, for individuals with intense disabilities, has no spending cap.
This new system went into effect Wednesday.
The practical result has been a cutback in services to many of the developmentally disabled. In an effort to be fair and give the clients a voice, Etters said, the clients themselves were given the responsibility of choosing what services they were willing to cut out of those they received.
Clients were also given the right to appeal the choice of tier the agency had made for them.
Out of the roughly 7,500 disabled people who are facing cutbacks in service, 4,550 of them have filed appeals. It is an extraordinary number, Etters said.
Part two will focus on the tiered funding pays for and talks to three individuals whose lives have been impacted by the new policy.
Visit www.weneedapdservicestoo.org.
Interested in joining the ADA Expertise listserv? Contact mdubin@pobox.com.
Saturday, January 10, 2009
Vote on Change.org to Fully Fund Medicaid Waivers for the Developmentally Disabled
President-Elect Obama is interested in addressing the concerns of families who want to end waiting lists, and you can influence the new Administration.
Ideas for Change in America is a nationwide competition to identify the best ideas for change in America. The top 10 ideas will be presented to the Obama administration just before inauguration day and form the basis of a nationwide advocacy campaign to turn each idea into actual policy.
One Idea: Fully Fund Medicaid Waivers for the Developmentally Disabled
Visit www.weneedapdservicestoo.org.
Interested in joining the ADA Expertise listserv? Contact mdubin@pobox.com.
Ideas for Change in America is a nationwide competition to identify the best ideas for change in America. The top 10 ideas will be presented to the Obama administration just before inauguration day and form the basis of a nationwide advocacy campaign to turn each idea into actual policy.
One Idea: Fully Fund Medicaid Waivers for the Developmentally Disabled
Visit www.weneedapdservicestoo.org.
Interested in joining the ADA Expertise listserv? Contact mdubin@pobox.com.
Friday, January 9, 2009
Did you know?
Source: The ARC of the United States
Did you know?
- There are over 300,000 people in the United States who are waiting for the appropriate services.
- The average wait to receive services is between 8 - 10 years.
- Government statistics report an 11% increase from 2006 to 2007 in the number of people reported by states to be on waiting lists.*
- Of the 2.8 million invidividuals living with a family caregiver, 716, 212 individuals are being cared for by someone over 60-years-old.
- Elderly parents are told the only way service would become available to their child is if they were to die. And even then, that adult child could face the prospect of being put in an institution due to the lack of available services.
- The Medicaid program has a long standing bias in favor of funding institutional, rather than less expensive community-based, services. Community-based services are cost effective and allow the individual to participate in and contribute to society, rather than be put in seclusion.
* Recent data from the Administration on Developmental Disabilities of the U.S. Department of Health and Human Services.
Visit www.weneedapdservicestoo.org.
Interested in joining the ADA Expertise listserv? Contact mdubin@pobox.com.
Did you know?
- There are over 300,000 people in the United States who are waiting for the appropriate services.
- The average wait to receive services is between 8 - 10 years.
- Government statistics report an 11% increase from 2006 to 2007 in the number of people reported by states to be on waiting lists.*
- Of the 2.8 million invidividuals living with a family caregiver, 716, 212 individuals are being cared for by someone over 60-years-old.
- Elderly parents are told the only way service would become available to their child is if they were to die. And even then, that adult child could face the prospect of being put in an institution due to the lack of available services.
- The Medicaid program has a long standing bias in favor of funding institutional, rather than less expensive community-based, services. Community-based services are cost effective and allow the individual to participate in and contribute to society, rather than be put in seclusion.
* Recent data from the Administration on Developmental Disabilities of the U.S. Department of Health and Human Services.
Visit www.weneedapdservicestoo.org.
Interested in joining the ADA Expertise listserv? Contact mdubin@pobox.com.
National ARC and the Waiting List Crisis
WAITING LIST CRISIS
The Waiting List has reached critical levels for individuals with intellectual and developmental disabilities and their family members seeking to receive the appropriate supports and services.
What is the problem?
Medicaid provides the majority of funding for programs and services for people with intellectual disabilities, including Home and Community-Based Services such as supported living, supported employment, transportation and respite care. While the federal government mandates that Medicaid services states are required to provide standards, states are not required to provide Home and Community-Based Services. Each state has the discretion to decide what services they will offer, how many people the waiver will serve and how much funding they will allot to each individual. With the economy in the state it is now, individuals with intellectual and developmental disabilities face more of a crisis as often times the supports and services are the first to be cut from the budget.
Continued on site.
Visit www.weneedapdservicestoo.org.
Interested in joining the ADA Expertise listserv? Contact mdubin@pobox.com.
The Waiting List has reached critical levels for individuals with intellectual and developmental disabilities and their family members seeking to receive the appropriate supports and services.
What is the problem?
Medicaid provides the majority of funding for programs and services for people with intellectual disabilities, including Home and Community-Based Services such as supported living, supported employment, transportation and respite care. While the federal government mandates that Medicaid services states are required to provide standards, states are not required to provide Home and Community-Based Services. Each state has the discretion to decide what services they will offer, how many people the waiver will serve and how much funding they will allot to each individual. With the economy in the state it is now, individuals with intellectual and developmental disabilities face more of a crisis as often times the supports and services are the first to be cut from the budget.
Continued on site.
Visit www.weneedapdservicestoo.org.
Interested in joining the ADA Expertise listserv? Contact mdubin@pobox.com.
Waiting List Lawsuit in Texas 2003
WHY WE ARE GOING TO COURT:
Thousands of people with disabilities languish on never ending
waiting lists. Many individuals have been waiting for more
than seven years. It is a Texas Tragedy.
Going without community services for so long has a profound
impact on these consumers and their families. Some parents
live in fear of dying before services can be secured for their
adult child with disabilities. Families are facing tremendous
pressure to support their loved one without outside help. Some
families are even facing the possibility of placing their son or
daughter in an institution far away from home.
The Legislature’s lack of response to our advocacy over the
last six years forces us to take the only other avenue of
advocacy that we have left…the courts. Accordingly, to
protect the rights and interests of the people on Waiting Lists,
we must seek action from the courts.
Interested in joining the ADA Expertiselistserv? Contact mdubin@pobox.com.
Thousands of people with disabilities languish on never ending
waiting lists. Many individuals have been waiting for more
than seven years. It is a Texas Tragedy.
Going without community services for so long has a profound
impact on these consumers and their families. Some parents
live in fear of dying before services can be secured for their
adult child with disabilities. Families are facing tremendous
pressure to support their loved one without outside help. Some
families are even facing the possibility of placing their son or
daughter in an institution far away from home.
The Legislature’s lack of response to our advocacy over the
last six years forces us to take the only other avenue of
advocacy that we have left…the courts. Accordingly, to
protect the rights and interests of the people on Waiting Lists,
we must seek action from the courts.
Interested in joining the ADA Expertiselistserv? Contact mdubin@pobox.com.
New Jersey lawsuit re Waiting List
DRNJ Sues State Over Division of Developmental Disabilities Residential Waiting List
Disability Rights New Jersey and Lowenstien Sandler, a prominent New Jersey law firm, filed a complaint in the U.S. District Court against the Department of Human Services, saying 8,000 people with developmental disabilities have had their rights violated because they have been waiting too long -- some for a decade -- to move into Division-sponsored community housing.
The lawsuit alleges the state is failing to meet its legal responsibility to provide housing for people who want or need to live outside of their family homes. The Department has established a waiting list, but few ever leave it unless a parent or other caretaker becomes ill or dies, the lawsuit said.
"These individuals have been for years diverted to a so-called 'wait-list' for such services, with no guarantee, and little hope, of accessing the services they need," said R. Scott Thompson of Lowenstein Sandler.
"The failure of the state to provide community services for thousands of individuals has had a devastating effect," said Emmett Dwyer, DRNJ's Director of Litigation. "Thousands of people are stuck at home going nowhere, and many of them have been unnecessarily placed in institutions when their elder parents could no longer care for them."
Disability Rights New Jersey and Lowenstien Sandler, a prominent New Jersey law firm, filed a complaint in the U.S. District Court against the Department of Human Services, saying 8,000 people with developmental disabilities have had their rights violated because they have been waiting too long -- some for a decade -- to move into Division-sponsored community housing.
The lawsuit alleges the state is failing to meet its legal responsibility to provide housing for people who want or need to live outside of their family homes. The Department has established a waiting list, but few ever leave it unless a parent or other caretaker becomes ill or dies, the lawsuit said.
"These individuals have been for years diverted to a so-called 'wait-list' for such services, with no guarantee, and little hope, of accessing the services they need," said R. Scott Thompson of Lowenstein Sandler.
"The failure of the state to provide community services for thousands of individuals has had a devastating effect," said Emmett Dwyer, DRNJ's Director of Litigation. "Thousands of people are stuck at home going nowhere, and many of them have been unnecessarily placed in institutions when their elder parents could no longer care for them."
What are the characteristics of individuals on the waiting list?
What are the characteristics of
individuals on the waiting list?
Primary disability
Mental retardation…………….. 67.6%
Cerebral Palsy…………………. 15.0%
Autism……………………………14.6%
Spina Bifida…………………….. 2.2%
Prader Willi Syndrome……….. 0.3%
High Risk………………………… 0.3%
85.1% of individuals have been waiting for waiver
services for up to 5 years.
For Additional Information
Becky Vickers, Staff Director
487-1316
Vickers.Becky@oppaga.fl.gov
Claire Mazur, Chief Legislative Analyst
487-9211
Mazur.Claire@oppaga.fl.gov
Jennifer Johnson, Chief Legislative Analyst
488-1023
Johnson.Jennifer@oppaga.fl.gov
Report available online at:
www.oppaga.state.fl.us/reports/health/r06-54s.html
source: Florida Legislature Office of Program Policy Analysis & Government Accountability Report, January 9, 2008
individuals on the waiting list?
Primary disability
Mental retardation…………….. 67.6%
Cerebral Palsy…………………. 15.0%
Autism……………………………14.6%
Spina Bifida…………………….. 2.2%
Prader Willi Syndrome……….. 0.3%
High Risk………………………… 0.3%
85.1% of individuals have been waiting for waiver
services for up to 5 years.
For Additional Information
Becky Vickers, Staff Director
487-1316
Vickers.Becky@oppaga.fl.gov
Claire Mazur, Chief Legislative Analyst
487-9211
Mazur.Claire@oppaga.fl.gov
Jennifer Johnson, Chief Legislative Analyst
488-1023
Johnson.Jennifer@oppaga.fl.gov
Report available online at:
www.oppaga.state.fl.us/reports/health/r06-54s.html
source: Florida Legislature Office of Program Policy Analysis & Government Accountability Report, January 9, 2008
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