The Financial SS Pre-Planning for a Minor Disabled Child - Most Important for the Non-Wealthy!
If you have a minor child who you understand is disabled but is not eligible to be a beneficiary of Social Security Disability Insurance benefits (SSDI) or Supplemental Security Income (SSI), keeping a tight file now may make the difference between her successfully availing herself of benefits you already paid for, at a later time when she CAN become eligible. Or not.
The reasons a disabled minor child may not be eligible for either SSDI or SSI are:
1) SSDI eligibility on one's own work record includes the minimum age of 18 years old. Children (no disability required) can, if applicable, be auxiliary beneficiaries, as dependents, on a disabled parent's (or deceased or SS retired parent) work record, but they themselves are not the insured party and will not get it based on their own disabilty.
2) SSI does not have an age minimum or maximum, nor required anyone be insured, but does require a level of "poorness". A parent's income is deemed to the child, (likely because a parent has a legal duty to use that income for the basic needs of the child). Therefore, often the child's income or resources puts him over the threshold for this welfare benefit based on "need."
But here is where a little organization and planning can make for a better financial future.
One auxiliary benefit of Social Security that a child can receive is an adult child's disability benefit if both of the following are true:
a) that child who is 18 or over and is provably disabled as per Social Security rules, prior to reaching age 22, and
b) if a parent who is insured for Social Security becomes SS disabled, retired, or deceased.
Often the parent's entitlement to Social Security is years later, even decades later. At that time, grown disabled children often lack the records of their treatment before age 22 and they, tragically, cannot prevail on a CDB claim because they can't prove the onset was before age 22.
If those adult children are "poor" and can only prove a current disability as adult, after age 22, they may be eligible for SSI. But, in general, CDB from Social Security based on a parent's work record is preferred. (That is a whole other topic for an entirely different piece.)
So, as a parent of a disabled child that you suspect may be unable to work "substantially and gainfully" as an adult later, your best financial planning for that child includes:
keeping up with ongoing treatment for that child (medical provider monitoring, tests/diagnostics/results, on a very reasonably regular basis) so that records are created of the existing medical impairments and their severity and limitations.
This is critical especially if the impairment is not treatable or curable, which can lead to years with no medical visits - and a complete lack of evidence later. Also, while a child, medical treatment tends to be more available without as much finagling, as when we are adults, particularly if we are not providing for our own health insurance. So a parent of a child may best serve the child to really use that coverage the child has, due to his minority status.
b) accumulating and retaining ALL medical records each year, long term retention.
Medical records have a way of disappearing after 7 years, (remember all those 'warehouse' fires?) and when that happens, and an application for CDB goes in at 40 years old when a parent's status triggers its eligibility, there will be no evidence to present of that early age onset. (Frankly, I'd keep multiple copies, including in the cloud, and in multiple locations, but I am anal like that. I'd keep a disc or a thumb drive or two as well. Some folks keep paper, and that is an option but should not be the only one.)
So obtain and keep ALL those records of childhood medical visits! Also, obtain and keep School Records - all IEPs, disciplinary reports (if any), grades/completions/incompletions, which can be of proof value later.
You can read the SSA pamphlet on Children with Disability, here.