 |
December 1997
|
 |
|
 |
|
|
|
December 1997
|
| |
|
|
|
|
By Susan Goodman, Esq.
URGENT: SSI REDETERMINATIONS
Reprinted with permission from the August 22, 1997 edition of "Friday Fax," by the National Parent Network on Disabilities
The Social Security Administration is reviewing or "redetermining" the eligibility of 288,000 children with disabilities who receive Supplemental Security Income (SSI) benefits. This review reflects changes in Federal law that more strictly define who is eligible for SSI cash payments. Of the 288,000 individuals, approximately 40% have been diagnosed with mental retardation. Very few appeals were filed, perhaps because it was unclear how this should be done. USA Today, August 15,1997, stated, "Nearly, 100,000 children have been ruled ineligible for disability payments under tougher guidelines enacted in last year's welfare reform."
There is a great risk of even more children with disabilities being terminated from the SSI rolls in this mass review. Therefore, parents and concerned citizens need to be provided with information on how they can work to assure that no individual who is entitled to SSI benefits lose them. Again, from the USA Today article, critics say poor children are being treated unfairly. "They've let a monster out of a cage that's devouring disabled children," said Philadelphia attorney Jonathan Stein, (from Community Legal Services) who won a 1990 Supreme Court case (ZEBLEY) that expanded the definition of disability.
Below you will find What Parents or Guardians Should Do to Appeal the SSI Redetermination. This summary includes information from many other materials, including a brochure developed by the Community Legal Services, Inc. of Philadelphia, Pennsylvania. Please use, duplicate, and/or distribute this material in any way that is useful.
HOW PARENT LEADERS CAN HELP
The National Parent Network on Disabilities is spearheading a campaign to get each state to request the names of the families notified by the Social Security Administration for redetermination or a cutoff of benefits. In letters written during May and August, Acting Commissioner John P. Callahan wrote to all Governors advising that the Social Security Administration would share names of families with state agencies to assist them in notifying families of the review. The notification could assure that proper review of the decision could be made without the loss of benefits during the appeal process.
NPND is preparing a state specific packet for parent leaders. This packet will explain exactly what action parents and advocates can undertake, working together to influence state agencies to take steps to assure proper notification to parents and guardians. For further information regarding the SSI-Appeal Campaign, check out the NPND web site at: http://www.npnd.org.
WHAT PARENTS OR GUARDIANS SHOULD DO TO APPEAL THE SSI REDETERMINATION
If your child is receiving Social Security Income Benefits (SSI), you may be receiving a letter from the Social Security Administration informing you that their benefits may or have been terminated. Be aware that YOU have the right to appeal within 10 days if you get a letter that says;
IMPORTANT NOTICE (YOUR CHILD'S NAME) SSI WILL STOP
If you complete a Request for Reconsideration form within 10 days, your childís SSI and Medical Assistance will continue during the appeal process. The Request for Reconsideration form will be included in the letter that says your child's SSI will stop. The following is very important.
Go to your local Social Security Administration office or return the information by the requested due date. Promptly deliver or mail all the records showing your child's disability. Provide the Social Security Administration with the names and addresses of people who have records documenting your child's disability, even if you do not have copies of your own. These records can be at hospitals, doctors, therapists, schools, social or mental health agencies. Make copies of ALL information forwarded to SSA.
If you miss the 10-day appeal limit, you can still appeal if you have a "good" reason for missing the deadline. Your child's SSI benefits will continue if your "good cause" appeal is accepted. If you miss the 10-day limit and do not have a good cause for missing it, you still can appeal the SSI cutoff within 60 days of receipt of the letter. Your child's SSI benefits, however, will not continue during the appeal if you miss the 10-day limit and do not have a good cause.
If you appeal your child's SSI cutoff, be sure to check the box that says, "I wish to appear at the disability hearing";
Be sure to ask for a written receipt from your local Social Security office that verifies the day you appealed your child's cutoff from SSI.
Get your child's doctors, teachers, and social workers to write letters for you that helps document your child's disability.
Give the letters to the Social Security Administration.
If your child has not been to the doctor or therapist recently, be sure to start going again.
Free help is available at your County Assistance Office (CAO) to help you gather the documents needed to prove your child's disability or appeal a cut off of SSI benefits. Ask for a worker from the Disability Advocacy Program or DAP.
Call legal services, legal aid, or your local lawyer's group (called a Bar Association) for free legal assistance, if you need help in filing an appeal. Check your phone book for telephone numbers or call Directory assistance. You can call the Social Security Administration's free hotline at (800) 772-1213 if you have questions about your child's SSI payments.
Call your local Parent Training and Information Center (PTI) which can give you up to date information, or call NPND for the number of the center closest to you.
Remember: you must cooperate with the review redetermination process to protect your childís SSI benefits. Most of all, return information on time and ask for help if you do not understand what you must do.
Disclaimer:
The opinions expressed herein do not necessarily reflect the position or the policy of the U.S. Department of Education, and no official endorsement by the U.S. Department of Education of the opinions expressed herein should be inferred.
: My child needs a more sophisticated communication device than the one he currently uses. Is the school district responsible for providing my child with a more appropriate device?
: If the device is needed for a student to benefit from his/her educational program as determined by the team developing the student's individual education plan (IEP), it must be provided at no cost to the parent. In addition, the new law says that assistive technology devices and services must be considered when developing an IEP. Since evaluation is considered an assistive technology service, the school district is obligated to consider whether a student needs an AT evaluation or reevaluation.
At your child's IEP meeting, request that the appropriate services be provided. Have documentation ready to support your claim for specific services. If the school refuses to provide the appropriate services, explain to the IEP team that you are rejecting the placement and inform them of your intent to place your child in a private school.
If holding an IEP meeting is not practicable, give written notice to the school of your concerns and your intent to make a private school placement. If the school district notifies you of intent to evaluate your child in writing (with a reasonable statement of purpose for the evaluation), you must make your child available for that evaluation.
Notice does not have to be given if the following circumstances are present: 1) a parent is illiterate and cannot write in English; 2) compliance with the notice requirement would likely result in physical or serious emotional harm to the child; 3) the school prevented the parent(s) from giving the notice; and, 4) parents did not receive notice from the LEA of their obligation to provide notice of intent to make a unilateral private school placement.
Consider the appropriateness of the student's placement;
Consider whether the public agency has made reasonable efforts to minimize the risk of harm in the child's current placement, including the use of supplementary aids and services; and,
Determines that the interim alternative education setting selected enables the student to continue to participate in the general curriculum; continues to receive the services in the student's IEP that will enable the student to meet the goals set out in the IEP.
In addition, the interim alternative placement should include services and modifications designed to address the behavior . . . so that it does not recur.
ENDBy Allan I. Bergman
Director
UCP State-Federal Relations DepartmentDisclaimer:
The opinions expressed herein do not necessarily reflect the position or the policy of the U.S. Department of Education, and no official endorsement by the U.S. Department of Education of the opinions expressed herein should be inferred.A major barrier for access to health care for people with disabilities continues to exist in the area of assistive technology/durable medical equipment. The testimonies presented to the President's Commission on Consumer Protection and Quality in the Healthcare Industry may be useful to you in working with health plans in your state, your State Legislators, your Medicaid agency and your Insurance Commissioner.
BACKGROUND
President Clinton appointed his Advisory Commission on Consumer Protection and Quality in the Healthcare Industry earlier this year. The Commission's membership represents all the stakeholders in health care including large and small employers, unions, physicians, hospitals, insurance companies, health plans and consumer advocates. The Commission is expected to issue a report and a set of recommendations to the President before the end of the year. The thrust of the recommendations will be to strengthen consumer access to managed health care.
OPPORTUNITY/INFLUENCES
Peter Thomas, Esq., chairs the Subcommittee on Consumer Rights, Protections and Responsibility. He was very creative in convincing the Commission that assistive technology was an issue that needed to be discussed as "parity" in health care coverage. The two witnesses chosen to address this issue were Mary Foto, O.T., President of the American Occupational Therapy Association and Muffi Lavigne, a UCP staff member who serves as Project Director for Project Inclusion, an Americorps project. An edited version of Muffi's testimony follows. (For a copy of Mary Foto's testimony, or for the unedited version of Muffi's testimony, please contact Gretchen Young at (202) 776-0406 or via e-mail at the atproject@ucpa.org address.) The Commission has not yet acted upon Mary's and Muffi's recommendations.
LOCAL/STATE USE
Although we will not know the outcome of the Commission's deliberations for several months, Mary's and Muffi's testimonies stand on their own merit. We urge you to review them carefully and to use them in work with your State Legislators, Insurance Commissioner, Medicaid agency, health insurance companies and managed care plans. Mary's testimony could also be shared with occupational therapists, physical therapists, speech/language pathologists and DME dealers for their use in writing justifications of "medical necessity" for the technology they prescribe.
Edited Testimony On The Need For Parity In Assistive Technology Benefits In Health Care For People With Disabilities
Presented by Margaret Lavigne, Rockville, MD
on behalf of
United Cerebral Palsy Associations
Washington, DCBefore the Subcommittee on Consumer Rights, Protections, and Responsibilities of the President's Advisory Commission on Consumer Protection and Quality in the Healthcare Industry
September 9, 1997
Chicago, IllinoisBRIEF PERSONAL HISTORY
My name is Margaret "Muffi" Lavigne. I am a living example of the issues presented to you today by Mary Foto. I am a 26 year old single woman. I have Limb-Girdle Muscular Dystrophy and currently utilize a scooter and a service dog for my mobility. I live in Rockville, MD, and work in Washington, DC, at the national offices of United Cerebral Palsy Associations (UCP). As the Project Director for Project Inclusion, a disability demonstration project from the Corporation for National Service, I travel regularly to, seven states to help recruit people with disabilities to become AmeriCorps Members.
Limb-Girdle Muscular Dystrophy is a progressive muscle weakness that affects the muscles in my arms, legs, and girdle area. Independent mobility was not a major issue during my childhood years. I was able to walk around independently due to twice weekly physical therapy appointments which began when I was 12 years old. The therapies were covered by my parent's insurance company as "medically necessary" and they enabled me to maintain functional mobility. My functional mobility needs in my daily life changed when I planned to attend the University of Connecticut, with a huge land grant campus. My physician prescribed a scooter for mobility in 1989.
Today, I continue to use a scooter from Electric Mobility - called a Rascal Convertible. It has four wheels and a power arm to steer by, which can fold down or back, thus enabling me to pull under my desk at work or at my dinner table at home and without worrying about a steering column sticking up in the middle of everything, forcing me to pull up along side the desk or table. Additionally, this is the only scooter on the market that comes with four wheels, a folding power arm, a seat lift and a seat that swivels. An essential use of these components is when I independently transfer into bed. I pull up along side my bed, raise the seat to its highest point, turn and lock the seat at 90 degrees and using a small transfer board, transfer into bed. Without any of these features, I would not be able to independently transfer nor would I be able to transfer from an electric wheelchair.
I use this scooter extensively, today, even more so than in college. This scooter provides me the most effective treatment to function in my daily life as close to "normal" as possible with my condition --a goal which I believe is the purpose of quality health care. My functional needs of daily living are defined by me, not an arbitrary category of equipment or by a location -e.g. my high school.
WHERE HEALTH AND DISABILITY MEET: SCOOTER/MOBILITY AID
I have been very fortunate in my life to have most of my acute care health issues be separate from my disability and mobility issues. However, the use of my scooter for mobility and transfer functions is the one place were these two issues intersect. An example highlighting this intersection happened earlier this spring. My scooter broke down and was in the shop for a week. The only rental I could obtain at my out of pocket cost of $79, was a three-wheeled scooter. Unfortunately, it really did not fit my individual needs! I did not feel totally safe in it, but I had no other choice. The rental scooter had wheels and I had to go to work. I needed my functional mobility.
The loss of technical capacity for independent transfer required facilitated transfers to assist me out of bed, to use the bathroom throughout the day and to transfer back into the bed at night. It also was extremely difficult to get any work done because I had very little room to try and pull up alongside my desk. I was never able to position myself fully under my desk. I also experienced difficulty typing, writing and eating, because I was constantly reaching forward, a range of motion for which I do not have much strength. I needed facilitated transfers at least two to three times a day, which unnecessarily increased my attendant care costs, all of which are out of pocket expenses.
The worst outcome of using the inappropriate scooter for only one week was that my health status had deteriorated. After I got my scooter back I was almost unable to restart independently transferring because my body was dependent on having facilitated transfers. This was extremely frightening to me, and also presented a future problem. Because of my Muscular Dystrophy, my body takes the path of least resistance. If I don't keep physically moving, I lose that mobility. It is medically necessary for my body to move on a regular basis to maintain tone and function.
MEDICAL NECESSITY/INDEPENDENT FUNCTION
Today, my scooter is clearly on its last legs. The group health insurance provided by my employer identifies for coverage three items which it deems as durable medical equipment: the rental of a wheelchair, a hospital type bed or an artificial respirator. In mid-November of 1996, I submitted a request for pre-approval of durable medical equipment to our health insurance carrier.
The insurance carrier denied my request, stating that a "scooter" is not a wheelchair and that a scooter is a convenience item. They did respond, however and offer to pay get me an electrical wheelchair. They have also agreed to purchase it for me rather than rent it because it would be more cost beneficial to do so!!
I provided medical documentation from my neurologist, a recognized "expert" in muscular dystrophy, stating the medical necessity for me to have a new Rascal Convertible scooter. He also has stated that an electric wheelchair would accelerate my disability. As Mary Foto previously testified, "an assistive device should 1) improve or maintain functional abilities, 2) prevent the development of secondary impairment and disabilities 3) increase independent living and 4) decrease or eliminate the need for caregivers." These health treatment outcomes and mine today because of this Rascal Convertible scooter. I would not have these outcomes with an electric wheelchair.
One of the principles of medical necessity is that the treatment should be the least costly, equally effective, alternative procedure, supply, equipment, or service that can be safely provided. The Rascal Convertible scooter clearly does just that. It costs between $5000 and $6000, versus the estimated cost of an electrical wheelchair to fulfill my needs and requirements ranges from approximately $12,000 to $20,000.
The insurance company admitted they do not have a definition of a wheelchair. To further complicate this health care issue, I have obtained documentation from HCFA and Electric Mobility that if a joystick is added (for an additional $1,000) to the scooter then the Rascal can be "coded" according to HCFA, as an electric wheelchair for the purposes of Medicare coverage. I again sent this information on to my insurance company and they still denied my claim.
I have been totally baffled through out this whole process. My medical team and I are attempting to maintain my current health status and daily function, save the insurer and my employer money, and delay or minimize future medical expenditures due to additional physician visits and physical therapy when my disability accelerates and my independence decreases. I know that if I am forced to get an electric wheelchair, my disability will exponentially accelerate, making everything else in my life an up hill battle while I struggle to try and at least maintain my current strength or if nothing else, try to slow the progress of the muscular dystrophy.
RECOMMENDATIONS:
I wish to remind you that functional impairment and disability are part of the normal experiences of life for most of us, whether directly or through a family member. Today's medical treatments offer great opportunities for all people to experience longer and more functional, healthy lives.
I urge you as the President's Commission on Consumer Protection and Quality in the Healthcare Industry to set forth recommendations that protect consumers with functional impairments and disabilities by assuring parity in coverage for assistive devices to assure that people can meet their functional needs of daily life whether it be mobility, communication, vision, hearing, etc.
 Home |
 Newsletter |
 Calendar |
 Previous |
 Index |
 Next |
 Contact |