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Please read and Share--- LETTER TO HEALTH REFORM LEGISLATIVE TASK FORCE, ASKING THEM TO ADDRESS THE WAITING LIST FOR COMMUNITY SERVICES AND SUPPORTS FOR ARKANSAS CITIZENS WITH DEVELOPMENTAL DISABILITIES.

12/15/2015

1 Comment

 
December 14, 2015  
The Honorable Cecile Bledsoe and Charlie Collins Co-Chairs, Health Reform Legislative Task Force  

Dear Senator Bledsoe and Representative Collins: 

We are a group of Arkansans comprised of individuals who have disabilities and their families, community members, and health and social services professionals who have been meeting together regularly for over three years now. 

We are writing to express our concern about the massive waiting list for community services and supports for Arkansas citizens with developmental disabilities and to ask that, as your task force develops a plan for our State to move forward with healthcare reform, these vulnerable individuals — almost 3000 in number — are not forgotten. 

During the last legislative session, we worked hard to promote the Community First Choice Option (CFCO), and we were repeatedly assured by legislators that, “while we don’t think CFCO is the right option, we’re committed to finding a way to do away with the waiting list.” 

Since that time, although members of the task force continue to express a willingness to end the DD waiting list, we have yet to hear any concrete proposal to address the 8–10 year-long wait for home and community-based services. We all understand that the task force is dealing with a multitude of issues; the waiting list is only one of many, but this is vitally important to those families who have been waiting and waiting for years. 

We’re contacting you today to ask for more information. Does the task force intend to make specific recommendations to the legislature to address the waiting list and, if so, what are those recommendations? Will potential savings realized under Medicaid reform be used to fund home and community-based services for people on the waiting list? Will funding those services be a priority in upcoming budget negotiations? What is the timeline for funding home and community-based services for people on the waiting list? 

We believe that we, as a group, could assist the task force to build statewide support for whatever plans you propose to serve people with disabilities living in the community. 

We sincerely appreciate the work that you are doing, and we respectfully ask that you share information related to potential waiting list plans with us. 
Thank you for your efforts on behalf of Arkansans with disabilities.  

Sincerely, 
Arkansas Autism Resource & Outreach Center (AAROC) - Dianna Varady, director.
Arkansas Disability Policy Consortium - Judy Brooks, chair.
Arkansas State Independent Living Council - Sha Stephens, president. Arkansas Support Network - Keith Vire, president.
Arkansas Waiver Association - Justin Nickels, association manager.
​Jane and John Browning - Parents of child on waiting list for 4.5 years.
Disability Resource and Advocacy Center - Brenda Stinebuck, executive director.
Disability Rights Arkansas, Inc. (DRA) - Tom Masseau, executive director. Independent Case Management - Cindy Alberding, president.
Integrity, Inc. - Vicki Grantham, director.
Michael Thornton - Self Advocate
Parent Advisory Council, Inc. - Angela Roberson, president.
Partners for Inclusive Communities - David Deere, director.
Spa Area Independent Living Services - Brenda Stinebuck, executive director. United Cerebral Palsy of Arkansas - Larry Stang, president and CEO.  
1 Comment
Dan Watson link
12/24/2015 11:16:29 pm

No comments? Where do we the disenfranchised Disabled and our family go on the internet to talk among ourselves? Our number in the tens of thousands of voices who are affected by the upcoming legislation which continues to put those of us with severely disabled children waiting for relief. We and our children want to remain at home.
Perhaps I should. after being dropped from DDS Waiver program with no transition, force you to find a space for him at a nursing home. Would you follow the law of the UDA ADA and honor the law of placement in the least restricted environment?
Would you have a van to transfer him and his 300 lb. $45 thousand wheelchair to college or the many other places he wanted.
Perhaps my keeping up 2 modified old vans is too much for me. One broken door 2 grand, and one that just had a door fixed among other things $4500.
Perhaps at 61. I should free up myself and my wife's personal time to enjoy the rest of our life, without stress of 24 hours a day quadriplegic.30 yr. old son.
The facts are his home is customized to a small degree and his life is customized to as great a degree as we can provide.
Could the state do better?
I have given up my ability to earn an income in order to take care of my son and am glad I did. The monies I get for offering this value added service most all go to his special needs. If a stranger did this, he would have 700 dollars a month to get by in a home that is paid for and vans need TLC weekly. Is it asking too much that we receive a stipend in-order to keep him from being a burden to a costlier and less acceptable alternative.
If you take the paper gathers like Abilities Unlimited and Focus out of the equation, you save even more. These people are needless middle men who drive new cars and invade our home with promises of durable medical devices and unreasonable exactions of their clients. My son has the use of one hand and arm, will you make a employer make adaptions for him to work a job on his intelligence level? He does have a masters from ASU and is high function mind in a nil function body.
Realicticly I think just putting him in a facility would be best on me and he can argue with you concerning his treatment from now own.
I'm tired, tired of hearing speculations from a Stephens group, at the cost of millions, who have no idea what it takes to keep my child for least cost to the state!
I'm tired of a Governor that has 3000 people with 3000 families on his list but not on the top of his list.
These disenfranchised citizens vote and contribute to the economy of Arkansas.
You fund companies to take a cut and pass it on in the care at home scenario. Let these companies force caseloads of up to 54 clients. My son has been served by dds waiver, Abilities and Focus and niether could write up a request for anything without at least a year wait and for the most couldn't arrange anything for 13 years. These companies are born from job creationism that is unnecessary in many, many cases.
No comments?
Where do we the disenfranchised Disabled and our family go on the internet to talk among ourselves? Our number in the tens of thousands of voices who are affected by the upcoming legislation which continues to put those of us with severely disabled children waiting for relief. We and our children want to remain at home.
Perhaps I should. after being dropped from DDS Waiver program with no transition, force you to find a space for him at a nursing home. Would you follow the law of the USA ADA and honor the law of placement in the least restricted environment?
Would you have a van to transfer him and his 300 lb. $45 thousand wheelchair to college or the many other places he wanted/needed to go to be independent?
Perhaps my keeping up 2 modified old vans is too much for me. One broken door 2 grand, and one that just had a door fixed among other things $4500.
Perhaps at 61. I should free up myself and my wife's personal time to enjoy the rest of our life, without stress of 24 hours a day quadriplegic.30 yr. old son.
The facts are his home is customized to a small degree and his life is customized to as great a degree as we can provide.
Could the state do better?
I have given up my ability to earn an income in order to take care of my son and am glad I did. The monies I get for offering this value added service most all go to his special needs. If a stranger did this, he would have 700 dollars a month to get by in a home that is paid for and vans need TLC weekly. Is it asking too much that we receive a stipend in-order to keep him from being a burden to a costlier and less acceptable alternative.
If you take the paper gathers like Abilities Unlimited and Focus out of the equation, you save even more. These people are needless middle men who drive new cars and invade our home with promises of durable medical devices, never to be acquired and unreasonable exactions of their clients. My son has the use of one hand and arm; will you make an employer make a

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