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Social Security and ADHD

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Several years ago, I applied for Social Security Benefits for my son James'. I did this for several reasons. The first was because of his medical condition and the second was for the medical benefits. Being disabled myself left me with no other medical coverage for my son other than the states med-i-cal program which was hit very hard in the mental health services for children shortly after James was diagnosed.

On top of already scarce mental health clinics with large and long waiting lists, childrens mental health services took huge budget cuts leaving help for children such as James at a minimum and only children who were in danger of being removed from their homes and placed into foster care or children who had crossed the boundaries into the Judicial system were given access to mental health services. Having social security benefits did several things for my son.

1). It opened the doors to doctors that before would not see him because he was on the state med-i-cal program, and two, it allowed a cash benefit that allowed services to be obtained that were not covered by giving us the extra cash we needed to pay for those services. It also allowed me to put James into programs that helped him tremendously with self esteem and social issues that we could not otherwise afford. The Bill President Clinton signed threatens to take these benefits away from our children and so I felt that for the time being, I would start this page on Social Security in order to share any information I receive or any that my readers receive on how they are being affected and what they are doing to perserve these rights if anything.

If you have any questions, answers, info etc, please feel free to send it this way and I'll post here on this page and see if we can find the answers to our questions.

E-mail Brandi Valentine

I had a reader write to me the other day and ask me for my best advice on applying for social security so I thought that I would share what I learned with all my readers. At the time I applied for SSI for my son, I felt, as did his doctors that James had a severe case of ADHD. It was explained to me that I should apply for social security in order to get the medical benefits that would allow me to obtain treatment for James and that due to the severity of the James' condition at the time, his doctors felt that there would be no problem getting him approved. Needless to say I was surprised when James was denied ssi and also a bit angry when I had knowledge of other children, not nearly as affected by add/adhd as James that had been approved. This didn't make sense to me and hinted that there must be other factors involved when approving someone for social security other than medical fact, so, I appealed the decision and started making phone calls and you'd be surprised what I learned.

One roadblock I ran into was the school district. Not only did they provide only minimal information during the first ssi inquiry, but they refused to even fill out the information for the appeal. The school psychologist and the teacher decided not to comply with the new request for information citing that paperwork had been done once before and that they were busy and couldn't stop what they were doing to fill out more paperwork. I felt this attitude was not only typical of the school district, but I was outraged at their audasity! How dare they take it upon themselves to assume that my son didn't need the benefits which ssi could provide for him which is how I interpreted their actions and attitude.

I started making phone calls after my son was denied and I learned that each worker is assigned X number of cases and they have X number of days once that case hits their desk to process it and move it off of their desk by either denying the case or approving it. Part of their evaulation for job performance is based on how effectively and timely cases pass through their hands. I found out that the worker who initially had my case denied it the day before he went on vacation. I concluded that the decision on my son's case was influenced by a worker, who in an attempt to clear their calendar before leaving on vacation, hurriedly and careless passed judgement on my son's disability in order to maintain their performance record .

The individuals and agencies that they contact in order to gain information on your child are not bound by any laws or regulations to comply with Social Security. If they send the information in by the time the file has to be processed or moved on that's fine, if not, the decision is made without the information. The next thing I learned was that the worker who was in charge of my sons's appeal, had some education in psychology and felt that ADD/ADHD was not a disorder but basically a parental problem and issue of enviornment. These children don't have a disorder, they suffer from bad parenting and parents who have no desire to parent their children in a fashion that commands discipline or forces them to function. She went on to tell me that if these parents would simply spank these children and enforce penalities for bad behavior, these children would straighten up!

In retrospect, if I had to do it all over again, my best advice is this:

  • Be very complete and thorough when answering the questionaires you will be sent. Take time to explain every item in detail and don't be bashful about using additional paper. In fact, I used a seperate piece of paper for each question and numbered them to correspond with the questionaire and used my word processor to compile a neat and ledgible report leaves you with a file you can return to if needed.
  • When you initially apply, do not leave it in the hands of others to insure that Social Security gets all the information they need to make an accurate and fair decision in your case. Gather as much information from every source that has documentation on how ADD/ADHD and any related disorders or issues affects your childs ability to function, day to day activities, and his/her ability to operate as other children. If you can do this before hand and send it in with your application, all the better.
  • Keep tight tabs on the progress of your application. I was able to call the Main Social Security Office to find out if my son's case had been assigned, and to whom it was assigned and also left a message for that worker to contact me.
  • I kept in close contact with my doctors, asking them if they had been contacted by social security and followed up to make sure they sent the records being requested.
  • Without harassing the worker about approving the case, I simply kept in contact to ensure that those contacted were complying with social security's requests. The worker was more than happy to tell me who had complied and who had not and I was able to contact the individuals and agencies involved and be sure they send the information requested out in a timely fashion. I did this because I learned during the appeal that those contacted for information on your child are in no way obligated by any laws or rules that they comply with any request for records. If any agency should fail to send in requested info, Social Security will make it's decision based on what they have which may not be enough.
  • Last but not least. DO NOT be afraid to stand up for your child's rights! YOU are his/her only advocate. In the end, I went to my Congressman to be sure that my child was getting an unpartial, unbiased and fair judgement in his case.

One more note before I get off my soapbox :) Another valuable lesson I learned was that when you initially apply for Social Security, they have a certain time frame in which to open/close the case. When you appeal a decision, your case comes under a whole new set of guidelines and rules and and can sit on someones desk for months before it becomes active again. I was told off the record, by a social security worker, that I would have been better off had I chose NOT to appeal the decision, waited the alotted time limit, and then just re-applied. This would have placed the case back at the begining, with the original time table and minus, any bias or judgemental input from previous workers. The down side to this is that if you choose to do this, you lose your original filing date and you start over which will affect what Social Security will owe you once you are approved. I also want to point out that I went through this several years ago and some things may have changed in the ways that Social Security operates or in how they deal with their clients. I also want remind you that with the signing of the 1996 welfare reform act by President Clinton, the laws have changed in how Social Security determines eligibiltiy for benefits. This however would not stop me from being as involved as I could be in making sure that Social Security has every tid bit of information that will help them make an informed decision.

The following information was taken from the Social Security Web site.

LEGISLATIVE BULLETIN 104-32 August 22, 1996 CHILDHOOD DISABILITY SSI Eligibility Based on Childhood Disability o Eliminates the comparable severity standard and provides instead that a child under age 18 would be considered under a disability if he/she has a medically determinable impairment which results in marked and severe functional limitations and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months. o Directs SSA to eliminate references to maladaptive behavior in the domain of personal/behavioral function in the Listing of Impairments for children and to discontinue the use of an individualized functional assessment in evaluating a child's disability. These provisions would be applicable to any individual who applies for SSI disability benefits, or whose claim is finally adjudicated, on or after the date of enactment, without regard to whether implementing regulations have been issued. Current Recipients o Requires SSA to notify recipients eligible for SSI disability benefits on enactment date and whose eligibility may be affected by the new childhood disability eligibility criteria, no later than January 1, 1997. o Requires SSA to redetermine the eligibility of such recipients, using the new childhood disability eligibility criteria no later than 1 year after the date of enactment. Benefits for those recipients who do not meet the new childhood disability eligibility criteria would terminate for the month beginning on or after the later of July 1, 1997 or the date of the redetermination. Eligibility Redeterminations and Continuing Disability reviews (CDRs) o Requires CDRs: -- once every 3 years for recipients under age 18 with non-permanent impairments; and -- not later than 12 months after birth for low-birth weight babies. o Requires the representative payee of a recipient whose continuing eligibility is being reviewed to present evidence that the recipient is receiving treatment which is considered medically necessary and available, unless SSA determines that such treatment would be inappropriate or unnecessary. If the representative payee refuses, without good cause, to cooperate, SSA may change the payee. o Requires an eligibility redetermination, using the adult initial eligibility criteria, during the 1-year period beginning on a recipient's 18th birthday. Applies to benefits for months beginning on or after the date of enactment, without regard to whether implementing regulations have been issued. o Repeals the present law requirement in the Social Security Independence and Program Improvements Act of 1994 (Public Law 103-296) that SSA (1) redetermine, using the adult eligibility criteria, the eligibility of one-third of the recipients who attain age 18 in or after May 1995 in each of fiscal years 1996 through 1998 and (2) submit a report regarding these reviews to the House Committee on Ways and Means and the Senate Committee on Finance not later than October 1, 1998. Medical Improvement Review Standard o Makes conforming changes in the medical improvement review standard to reflect the new definition of disability for children who file for SSI benefits. Applicable with respect to benefits for months beginning on or after the date of enactment, without regard to whether implementing regulations have been issued. Funding o Authorizes the appropriation of an additional $150 million in fiscal year 1997 and $100 million in fiscal year 1998 for the costs of processing CDRs and redeterminations. Regulations o Requires SSA to issue regulations implementing the changes relating to benefits for disabled children within 3 months after enactment date. o Directs SSA to submit all final regulations pertaining to a child's eligibility for SSI disability benefits to the Congress at least 45 days before such regulations become effective. Reports o Requires SSA to report to the Congress, not later than 180 days following the date of enactment, on its progress in implementing the changes in the SSI disabled children's provisions. o Requires GAO, not later than January 1, 1999, to study and report on the impact of the changes made by this Act on the SSI program and the extra expenses incurred by families of children receiving SSI benefits that are not covered by other Federal, State, or local programs.

This was sent to me by Nessa, a reader who works at the 1-800 number for Social Security. She wrote to tell me that anything she sends me is ACCURATE and wanted to be sure that credit was given where credit was due. She also wanted me to mention that the following information comes from Commisioner Shirley Chater. For more information check out the Social Security Web Site, and lots of recognition to Nessa for sending me the information.

On August 22, 1996, the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 changed the definition of disability for children under the Supplemental Security Income Program (SSI). The new definition of disability requires a child to have a physical or mental condition or conditions that can be medically proven and which result in a marked and severe functional limitations; requires that the medically proven physical or mental condition /conditions must last or be expected to last at least 12 month or be expected to result in death; says that a child may not be considered disabled if he or she is working at a job that we consider to be substantial work. The new law also changes the we consider certain behavior problems caused by a child's condition/conditions. Some children who are now eligible may be affected because of these changes, we may no longer consider some children disabled. The law requires us to review the cases of certain children who are now eligible for SSI to see if the are disabled under the new definition of disability for children. What we will do is send letters to the representative payees for these childre before January 1, 1997, telling them that we expect to review their cases. Before the review starts, we will contact each child's representative payee for information about the child's condition. After we review the case, we may decide that the child is still disabled, or we may decide that he or she is not disabled because of the new law. If we find the child is not disabled because of the new law, we will stop the child's SSI. SSI will not stop before July 1, 1997, as long as the child meets all other eligibility rules. When we make our decision, we will sned another notice to explain it. That letter will also explain the right to appeal the decision and will discuss continuation of benefits during the appeal. If a child is getting medicaid based on SSI, Medicaid should continue as long as he or she gets SSI. The Law requires us to do continuing disability reviews to determine whether or not the chid is still disabled. The continuing disability reviews (CDR"S) must be done at least every 3 years for recipients under age 18 whose conditions are likely to improve; and the CDR's must be done not later than 12 months after birth for babies whose disabiity is based on their low birth weight.We also may do CDR's for recipients under age 18 whose conditions are not likely to improve. Representive Payees must provide evidence of treatment at the time we do a CDR, the representative payee must present evidence that the child is and has been receiving treatment considered medically necessary and availabe for his or her disabling condition. This is true in every case unless we determine that requiring such evidence would be inappropriate or unnecessary. If the childs representative payee refuses without good cause to provide such evidence when requested, we will suspend payment of benefits to the representative payee and select another representative payee if it is in the best interest of the child, or, we may pay the child directly, if he or she is old enough. These rules apply to benefits for the months beginning on or after the date of the enactment of the new law. The law requires a disability redetermination at age 18. Any individual who was eligible as a child in the month before he or she attained age 18 must have his or her eligibility redetermined. The redetermination will be done during the one year period begining on the individual's 18th birthday. We will use the rules for adults filing new claims to do the redetermination. Important note about children in certain medical care facilities: In addition to the new definition of disability, the new law affects children under age 18 who live, for an entire calendar month, in certain institutions where a private health insurance pays for their care. The monthly SSI payment for these children will be reduced to $30. Previously, the $30 SSI payment applied to children in institutions where Medicaid paid more than 50 percent of the entire cost of their care. For more information, 24 hours a day, call Social Security's toll free number, 1-800-772-1213. If you need to speak to a representative, call between 7am and 7pm, monday through friday.

Update! SSI Benefits

SSA Will Review 45,000 Cases of Children Who Had SSI Disability Benefits Ceased, Offer Second Chance for Appeal to All Social Security Commissioner Kenneth S. Apfel anounced on December 17, 1997 that some 45,000 children who had their Supplemental Security Income (SSI) disability benefits ceased under stricter eligibility provisions of the 1996 welfare reform law will have their cases reviewed. In addition, the families of children who lost benefits and who did not appeal that decision will be given a second opportunity to do so. See also the complete report, Review of SSA's Implementation of New SSI Childhood Legislation.


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