Children don't get disability based on private insurance, so that's not an issue here.  They do get SSI payments if their parents can prove they are disabled and if the family meets a pretty severe low income test.  Check with Social Security to find out if your family is poor enough to qualify.

    The files below can be helpful if you get involved in this process.

    One point not stressed sufficiently in these files (and which applies to adults as well as children) is that Social Security doesn't award disability based on how sick a person is, or how severe their symptoms are.  The test is whether they are unable to perform normal activities.  They look at how long you can stand up, how long you can sit up, how far you can walk, low many minutes can you concentrate on a written task, how long you can go without lying down to rest,  and so forth.  But they don't take the patient's word for that, or his parent's word for it either.  They expect the physician to document these aspects of the patient's life.  Which is something most doctor's don't do.  They focus on the illness itself.

    What you can do about this is write a note summarizing your child's activity limitations in clear handwriting (or type it) and give it to the physician several times each year.  Discuss it with him and ask him to put it in the record.  Be sure the note is dated.  Notes like these will eventually go to Social Security and will be taken seriously there.

    Another helpful tactic is to get reputable non-medical  people to write letters of support in which they describe activity limitations they have observed.  Letters from clergy, from coaches, from neighbors who knew the child before the illness--all these can be very helpful.

    You should also expect the first application to be turned down.  That's almost routine.  You are expected to appeal.  The appeal may be turned down too.  Don't despair.  Get a lawyer who is experienced with the process and re-appeal.  Many re-appeals are approved.

    You don't have to pay the lawyer if you lose, and you don't have to pay him until the award comes through.  When it does come through, the payments will start as of the date of the original application so you will start with the large lump sum with which to satisfy the lawyer.

    When your child turns 18 he becomes eligible for SSI as an adult.  He will now be considered a family of one, even though he still lives at home.  If he has a low income, or no income, he will be able to get SSI regardless of your  overall family income.  This means you want to start documenting his disability months or years before his 18th birthday.

    These files will help:

A Brief Explanation of the Social Security Disability Process
Getting Respect from the Legal System.
 

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