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
Organization: Left Behind in Florida
Left Behind in Florida
8693 Meadowbrook Drive Pensacola FL 32514
(850) 377-1960 mikecoonan@cox.net
About US
Left Behind in Florida is an organization of parents who have a child with a developmental disability (Mental Retardation, Cerebral Palsy, Autism etc) on the State of Florida’s Agency for Person with Disabilities (APD) Wait List. We represent 20,000 families in Florida waiting for help. We make up 40% of all families who have a child with a developmental disability who have been determined to be eligible for APD’s assistance. Many of our families are struggling alone, while dealing with life threatening conditions at home. We are committed to full funding for the DD System in the State of Florida. We are committed to be strong advocates for our children with disabilities!
The Problem
In Florida, 20,000 people with a developmental disability (diagnosis of Mental Retardation, Cerebral Palsy, Autism, Epilepsy, Spina Bifida, and similar conditions) are on the Agency for People with Disabilities, (APD) Wait List for services. Many of people with disabilities have been on this wait list since 2003 or longer and they are being told that they cannot expect to get any help from APD until 2012, if then. Currently, Florida provides APD services for 30,000 people with a developmental disability, and the state is threatening to cut back these services. Two out of five or 40% of all people with a developmental disability are waiting for life prolonging/saving help.
What do we need?
Our families on APD’s Wait List have almost nothing. Some of our families need help with 24 hour care. Our children are forced to sit home (at times alone), everyday. Our children do not have opportunities for social interactions. Our children are not able to live independently. Even our families who want to be their guardian are charged exorbitant court related fees just to stay involved with their adult child. Our children do not have access to work training or day program experiences. Our children do not have transportation to get to these activities. Our children need help from physical therapists and behaviorists and other professionals to allow them to function at their maximum potential. In many cases, our children have been cared for by our families alone for 40 years or more with no help. Our families get no respite. Yet living next door to our families on the Wait List, are the lucky few, who are getting all the help listed above from the Agency for Person with Disabilities.
How to get help from APD
The current criteria getting off APD’s Wait List and getting help is for a parent to abused their child and to then throw them into the street i.e. “abandoned” them. (In a statement (words to this effect) by David Robinson Administrator for APD Area 1, at the Family Care Council meeting, in Pensacola Fl, in August 2008)
Decision Makers
Governor Charlie Crist and 160 state legislators (40 State Senators and 120 State Representatives) control the Florida State budget. It is necessary to get at least a majority vote in each house to pass a budget. Therefore, we need 21 State Senators and 61 State Representatives to vote for full funding for the DD system in Florida.
The Costs
The Florida State budget in 2009, for the Agency for People with Disabilities is $1.2 billion dollars. APD is serving about 30,000 people with a developmental disability. It will cost another $500 million dollars to add the 20,000 people with a developmental disability people waiting for services. APD’s services are provide via a program called the Medicaid Waiver, in which the State of Florida pays 55% of the costs, which is matched by the Federal Government which pays 65% of the costs. Therefore, when the State of Florida pays $175 million dollars for our children, it is matched by the Federal government which pays $325 million dollars.
How will the State of Florida pay for full funding of the DD System?
The first question that must be asked is:
Do our State Legislators want to pay for full funding for the DD System?
The answer is NO!
If the state legislators wanted to fully fund the DD System it would be funded. Our job as advocates is to change their minds. We must be prepared to encourage them, educate them, nurture them, support them, give them options and when all of this fails (which it will) we must ADVOCATE. Everybody and their brother have been doing the above in a politically correct fashion. We need to hold these state legislators accountable. For example before the legislature funds illegal aliens’ health care or criminals in prison recreation, they must fully fund the DD system.
Left Behind in Florida’s Proposal for Fully Funding for the State DD System
Each State Legislator (Senators and Representatives) will commit additional $1,090,000 from the state budget for DD services for their district. This totals about $175,000,000 which will be matched by the Federal government contribution of $325,000,000. This will provide a total of about $500,000,000 new money to fully fund the DD System.
This is just one suggestion. Please add your ideas.
Contact Person: Mike Coonan 850 277 1960 mikecoonan@cox.net
8693 Meadowbrook Drive Pensacola FL 32514
(850) 377-1960 mikecoonan@cox.net
About US
Left Behind in Florida is an organization of parents who have a child with a developmental disability (Mental Retardation, Cerebral Palsy, Autism etc) on the State of Florida’s Agency for Person with Disabilities (APD) Wait List. We represent 20,000 families in Florida waiting for help. We make up 40% of all families who have a child with a developmental disability who have been determined to be eligible for APD’s assistance. Many of our families are struggling alone, while dealing with life threatening conditions at home. We are committed to full funding for the DD System in the State of Florida. We are committed to be strong advocates for our children with disabilities!
The Problem
In Florida, 20,000 people with a developmental disability (diagnosis of Mental Retardation, Cerebral Palsy, Autism, Epilepsy, Spina Bifida, and similar conditions) are on the Agency for People with Disabilities, (APD) Wait List for services. Many of people with disabilities have been on this wait list since 2003 or longer and they are being told that they cannot expect to get any help from APD until 2012, if then. Currently, Florida provides APD services for 30,000 people with a developmental disability, and the state is threatening to cut back these services. Two out of five or 40% of all people with a developmental disability are waiting for life prolonging/saving help.
What do we need?
Our families on APD’s Wait List have almost nothing. Some of our families need help with 24 hour care. Our children are forced to sit home (at times alone), everyday. Our children do not have opportunities for social interactions. Our children are not able to live independently. Even our families who want to be their guardian are charged exorbitant court related fees just to stay involved with their adult child. Our children do not have access to work training or day program experiences. Our children do not have transportation to get to these activities. Our children need help from physical therapists and behaviorists and other professionals to allow them to function at their maximum potential. In many cases, our children have been cared for by our families alone for 40 years or more with no help. Our families get no respite. Yet living next door to our families on the Wait List, are the lucky few, who are getting all the help listed above from the Agency for Person with Disabilities.
How to get help from APD
The current criteria getting off APD’s Wait List and getting help is for a parent to abused their child and to then throw them into the street i.e. “abandoned” them. (In a statement (words to this effect) by David Robinson Administrator for APD Area 1, at the Family Care Council meeting, in Pensacola Fl, in August 2008)
Decision Makers
Governor Charlie Crist and 160 state legislators (40 State Senators and 120 State Representatives) control the Florida State budget. It is necessary to get at least a majority vote in each house to pass a budget. Therefore, we need 21 State Senators and 61 State Representatives to vote for full funding for the DD system in Florida.
The Costs
The Florida State budget in 2009, for the Agency for People with Disabilities is $1.2 billion dollars. APD is serving about 30,000 people with a developmental disability. It will cost another $500 million dollars to add the 20,000 people with a developmental disability people waiting for services. APD’s services are provide via a program called the Medicaid Waiver, in which the State of Florida pays 55% of the costs, which is matched by the Federal Government which pays 65% of the costs. Therefore, when the State of Florida pays $175 million dollars for our children, it is matched by the Federal government which pays $325 million dollars.
How will the State of Florida pay for full funding of the DD System?
The first question that must be asked is:
Do our State Legislators want to pay for full funding for the DD System?
The answer is NO!
If the state legislators wanted to fully fund the DD System it would be funded. Our job as advocates is to change their minds. We must be prepared to encourage them, educate them, nurture them, support them, give them options and when all of this fails (which it will) we must ADVOCATE. Everybody and their brother have been doing the above in a politically correct fashion. We need to hold these state legislators accountable. For example before the legislature funds illegal aliens’ health care or criminals in prison recreation, they must fully fund the DD system.
Left Behind in Florida’s Proposal for Fully Funding for the State DD System
Each State Legislator (Senators and Representatives) will commit additional $1,090,000 from the state budget for DD services for their district. This totals about $175,000,000 which will be matched by the Federal government contribution of $325,000,000. This will provide a total of about $500,000,000 new money to fully fund the DD System.
This is just one suggestion. Please add your ideas.
Contact Person: Mike Coonan 850 277 1960 mikecoonan@cox.net
Some Questions To Ponder - Understanding the Problem
Imagine that you are an organization that serves 100 people with developmental disabilities. Imagine that your budget allows you to serve only 60 of them.
How do you deal with the problem that 40 of the people you serve never receive your services?
Do you simply tell them "maybe next year, when we have more money in the budget?"
Do you tell them "we will put you on a waiting list,and someday, maybe, we will provide you with services?"
Do you identify clients with needs that are more easily served,and give them priority,or identify clients who have greater, more complex, more expensive needs, and give them priority?
Do you provide services for a certain period of time to the 60, and then cut off or diminish their services, and begin to serve the 40? Or do the 40 risk waiting forever?
No good answers, admittedly. But aren't the questions important, and isn't the discussion essential?
If the 40, and their allies, are not at the table to have the discussion, what are the chances that their needs will be addressed?
Consider the following:
In Florida, as of May 2008:
31,028 persons with developmental disabilities received services from APD.
40% of people with developmental disabilities who are eligible for APD's services are on the waiting list.
The number of persons with developmental disabilities who are on the Medicaid waiver wait list was 23,171.
There were 10,244 persons age 6 to age 22 waiting for services.
Over the age of 22, there were 6,147 persons waiting, and waiting.
Of those receiving services in Florida, 20,000 out of the 31,028 who are receiving services live in the family home.
Of those who are on the wait list, 14,503 clients live in the family home compared to 1,254 living either independently, in group homes or institutions.
Who is advocating for those who are forced to wait?
Is the discussion even occurring? Do those responsible for serving clients with developmental disabilities advocate for those on the waiting list?
We want to hear from you. What is your experience like? What are your thoughts?
How do you deal with the problem that 40 of the people you serve never receive your services?
Do you simply tell them "maybe next year, when we have more money in the budget?"
Do you tell them "we will put you on a waiting list,and someday, maybe, we will provide you with services?"
Do you identify clients with needs that are more easily served,and give them priority,or identify clients who have greater, more complex, more expensive needs, and give them priority?
Do you provide services for a certain period of time to the 60, and then cut off or diminish their services, and begin to serve the 40? Or do the 40 risk waiting forever?
No good answers, admittedly. But aren't the questions important, and isn't the discussion essential?
If the 40, and their allies, are not at the table to have the discussion, what are the chances that their needs will be addressed?
Consider the following:
In Florida, as of May 2008:
31,028 persons with developmental disabilities received services from APD.
40% of people with developmental disabilities who are eligible for APD's services are on the waiting list.
The number of persons with developmental disabilities who are on the Medicaid waiver wait list was 23,171.
There were 10,244 persons age 6 to age 22 waiting for services.
Over the age of 22, there were 6,147 persons waiting, and waiting.
Of those receiving services in Florida, 20,000 out of the 31,028 who are receiving services live in the family home.
Of those who are on the wait list, 14,503 clients live in the family home compared to 1,254 living either independently, in group homes or institutions.
Who is advocating for those who are forced to wait?
Is the discussion even occurring? Do those responsible for serving clients with developmental disabilities advocate for those on the waiting list?
We want to hear from you. What is your experience like? What are your thoughts?
Welcome to Our Blog
In Florida, over 20,000 people with developmental disabilities are languishing on a waiting list for services. Every day, these individuals, acknowledged by the state of Florida as in need of services, wait, and wait, and wait.
This Blog is designed to help them, to give them a voice, to identify solutions to the problem.
we welcome your stories, guidance, support, and insights. Please contact us at mdubin@pobox.com.
This Blog is designed to help them, to give them a voice, to identify solutions to the problem.
we welcome your stories, guidance, support, and insights. Please contact us at mdubin@pobox.com.
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