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Volume 78

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Hi, I’m Craig Kendall, the author of The Asperger’s Syndrome Survival Guide. In today’s issue we will discuss…

Providing for Adult Children with Autism and
Asperger’s Syndrome after Your Death

You have raised your child with autism and he or she is now an adult. You help them out in many ways…like you always have. Financially. Emotionally. Getting around. Giving advice.

But what will happen when you die? Who will support your child? How will they manage?

These are common questions that every parent with a special needs child will eventually have to face. I recently received this email from parents in exactly this situation.

Hi Craig,

We live in [town], MN. Our son Sam lives near us.  He was diagnosed with Aspergers in 2008.  He’s always had problems and seems to be a textbook Asperger’s adult.  He is 31 now, very hi IQ, works at a job stacking shelves.  We’ve been supporting him–insurance, RX, etc.  We’re in our 60s now and need to find a way for him to get health insurance and med coverage and some assistance in general. A caseworker would really help–he has difficulty doing those things.  He didn’t qualify for Social Security Disability because he was working and had money in his checking acct.  But, we have paid for almost everything and if we quit, we’re afraid he’d end up in a BAD spot. He pays for his rent. The money in the bank makes him feel secure–gifts, some he’s earned. Please help us help him find some help!  He’s 31 and has been trying for 10 yrs. but we just don’t get anywhere.  Thank you.   Susan

Note: Please check with your own legal and medical professionals before making any decisions. The information provided here is not meant as legal or medical advice. All rules for SSI, SSDI change constantly as do all laws.

The Diagnosis for an Adult with Autism

In the case of an adult, it is best to be certain that your son’s diagnosis was formally made by a psychiatrist. The reason for this will be clearer as you read further.

Support through the Mental Health System

If you are currently paying for your son’s healthcare, then hopefully the insurance covers psychiatric services. You should inform his general practitioner of the potential/actual Asperger’s diagnosis and request a referral for mental health/psychiatric supports.  Your son’s best bet for support across his lifespan will come through the mental health system.

If he has a high IQ and a job stacking shelves, he is clearly not meeting his potential.  If he really does have Asperger’s, then it is likely that he may have additional conditions typical of those with Asperger’s such as depression, rigidity, anxiety, problems coping, and so on (these are often referred to as co-morbid mental health needs).  

All of these needs can typically be improved through a combination of therapy and, if needed, medication.  A psychiatrist will assist with these and with connecting him to group or individual therapy. While I wish this was not true, a mental health diagnosis will actually help him in the long run relative to lifespan services, particularly if he continues to work low wage jobs.

Government Assistance for Adults with Autism

Your son (with a formal disability diagnosis) is likely eligible for SSI — but probably not for SSDI.  SSI is given to people who are adults and disabled, and these folks are also eligible for Medicaid so the two go hand in hand. Medicaid would then cover his medical, medication, psychiatric, and other services. 

The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program.

Social Security Disability Insurance (SSDI) pays benefits to you and certain members of your family if you are “insured,” meaning that you worked long enough and paid Social Security taxes.

Supplemental Security Income (SSI) pays benefits based on financial need.

Financial Considerations

If you can, you may want to consider putting money for your son in a bank account to help pay for his future needs when you are no longer able to give your son gifts and other financial support.  See more details below regarding Special Needs Trust.

The sad fact about Social Security is that if he earns too much or has too much money “in his name”, then he won’t be eligible to receive benefits. Even with smaller amounts, there may be a reduction in benefits if he earns over a certain amount (in 2012 is annual earnings over $14,640). Per the SSI site, “If you are younger than full retirement age during all of 2012, we must deduct $1 from your benefits for each $2 you earned above $14,640”.  This is a real problem with that system.  See How much can I earn and still get benefits?

Financial Strategy to Protect Disability Benefits

An option is for your son is to spend down the money he has, and that (if he’s willing) you (as his parents) keep his future savings/gifts in an account in your name and you buy him the things/services he needs.  He will still know the money is there for him, he will just have to go through you to get it.

After you die, he will then get this money from his trustee (see below under Special Needs Trust). Some might suggest that he work part time at his job so that he CAN be eligible for SSI (although I don’t this is a very good option). From what you said in your email, I don’t think he’s eligible for SSDI because his disability wasn’t diagnosed prior to age 18.

As his parents, you may need to support him for a while because it takes some time for the payments to kick in after someone has established eligibility.  Another advantage to SSI (which may also justify him working only part time) is that this makes him eligible to live in a board and care facility should he ever need to do this.  Board and care will provide meals, assistance with medications, recreational options, and some degree of “supervision”. While this is not the “case management”, you are seeking, it may work for him in combination with the mental health supports. This would be an option for him once his family can no longer help care for him.

Special Needs Trust – Providing for Your Children with Autism

If your son receives a disability diagnosis, you should establish a Special Needs Trust for him. Basically, this assures that you can leave him money when you die and this money will NOT count against his SSI and other government benefits. That is because money that people gift him officially belongs to the trust and not to him. 

The way this works is that as parents, you designate in your will that a certain percentage of your assets upon the death of the second parent will go to his Special Needs Trust.  If you don’t have any assets or money that you can leave to a trust, you should take out a life insurance policy that will provide money for him upon your death. The insurance policy will list the “Trust of [son’s name]” as the beneficiary rather than listing the son as the beneficiary. 

Setting Up a Special Needs Trust

When you set up the trust, you can designate how you would like this money to be spent on his behalf. For example, right now with the money in his personal account, he could choose to give it to a “friend” or easily be victimized.  If the money is in a trust, then the trustee will assure that money set aside for him is only used for the purposes you, as his parents, established.

Establish a Trust Advisor

When you set up the trust, you will establish a “trust advisor” who oversees that the money is spent the right way.  If you don’t have someone who is a trusted friend or family member to do this, then the trust can pay for a professional trustee (which obviously spends some of your son’s money on someone other than him). Regardless of whether the trustee is a professional, friend, or family member, I recommend that you also set up a “trust advisory committee”.  These ARE friends and family (usually 3-5 people) whom the trustee will need to consult before spending money in the trust.  It keeps everyone “honest” and also gives the trustee people they can turn to for help. If you cannot afford to set up a trust, check into “pooled special needs trusts” in their area.  There may not be any, but it’s worth checking out.

“Asperger’s” as a Diagnosis

Finally, as I’m sure you know, the DSM is eliminating “Asperger’s” as a diagnosis category.  I don’t know how this will impact services for folks who have this diagnosis in the future, but to play it safe I’d suggest he get a diagnosis of Autism Spectrum Disorder if at all possible.

Note: The Diagnostic and Statistical Manual of Mental Disorders (DSM) published by the American Psychiatric Association provides a common language and standard criteria for the classification of mental disorders. In the current edition of the DSM, Asperger’s is one of several subgroups of autism identified by separate labels. The definitions of these lables have been subject to varying interpretations and a person can be categorized with one label by one therapist and given a different label by another therapist/doctor. In the next edition of the DSM, which will be published in 2013, the varying subcategories of autism will be eliminated and a single diagnostic label for “Autism Spectrum Disorder” will be used for everyone.

 Additional Information for Adults with Asperger’s Syndrome

For additional information for adults with Asperger’s syndrome or high functioning autism, see my book, Thriving in Adulthood with Asperger’s Syndrome. In this comprehensive book I cover topics to help not only adults with autism thrive but also help those who love them.

9 Responses to Providing for Adult Children with Autism and Asperger’s Syndrome After Your Death-78

  1. beverly says:

    57 year old male being put into jail for child support even
    Though he applied at 31 places.for a job. His ex-wife put
    On legal paper it was to punish him. She knows he has Aspergers , but he doesn’t, have official diagnosis. He has a problem keeping a job. She works for disabled agency..He doesn,t know he has a problem because he
    Is so intelligent. Where should he start first?

    • Craig Kendall - Author says:

      There are many potential benefits for an adult to have an official diagnosis of Aspergers/autism. This is possibly one example. To get a diagnosis, the best place is to start with your primary care physician and get a referral to a specialist. Tell your physician that you want to get a diagnosis and you think that you have high functioning autism or Asperger’s syndrome. To find a therapist who specializes in adults can be challenging. One place to look is to find a local Asperger’s support group. This newsletter can help you find one near you:
      Aspergers Support Resources

  2. Susan Germain-Wachs says:

    My son is 22 and has never worked. He was denied SSI, he just started Welbutrin, but after years of taking stimulants for a misdiagnosis of ADHD, he was VERY reluctant to try anything. He takes 2 classes at the jr. college and goes to 2 anime for aspies. No friends, no one he can count on when we are gone. We have no friends or family who would be able to support him.

  3. Lida Mitchell says:

    I have 20 year old grandson and am looking for some place in Memphis Tennessee that can help with social skills? He has Aspergers. I have had diagnosed 4 years now. he has got driver license. and ged. He also draws ssi. Please can you help me.Houston is his name
    Lida Mitchell

  4. Florence says:

    My son is 37years old and was diagnosed very very late. Therapists are working with him now, just to get what he will be interested in that will make him useful. Iam in Nigeria and social services is not practised here. How can i help him to survive when i am gone?

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