Trying to set my autistic brother up for later in life.

Read the Story

Show Top Comments

Wish I had advice for you, but just here to say you’re doing a remarkable thing. Hope it all works out.

mannymoes2k

I think it’s awesome that you’re doing this. And I’d suggest looking into a special needs trust.

saphirestorm

Tell your parents to look into a second to die (sometimes called survivorship) life insurance policy. A second to die policy is used to fund an estate and covers two lives and is often used to fund special needs trusts. You can also get the same for yourself if you have a spouse. After the second person dies the policy will pay out, preferably to a special needs trust. The benefit of a second to die policy versus an individual policy is that the insured receives a much larger death benefit for the premium because two lives are covered which reduces the risk of a premature death significantly. Additionally only one of the two insureds needs to be insurable.

Toltec123

Great (and wise) thing you are doing! I have three kiddos on the spectrum, and trying to navigate disability, insurance, etc. is complicated at best! The income limits for disability are fairly low, so your brother may not be approved for that reason. However, there are mental health waivers available in some states that are not based on income. Individuals approved for these waivers are then eligible for state insurance (Medicaid) as well as services like respite care. The waiting list can be long, however. It might be worthwhile to see if your state has anything like that available. As others have stated, you might look into an ABLE account. He can have I believe up to $100,000 in that account and still be eligible for disability and Medicaid. The funds can then be used for qualifying expenses like education, housing, transportation, job training, etc. ​ Another suggestion would be joining some Facebook groups for parents/caretakers of autistic individuals. In my experience, the best way to get ideas is from other experienced parents who know the ins and outs of the healthcare system, the education system, the insurance companies, etc. They are full of valuable information and will gladly share it with you. For example, I was struggling for a time with the cost of supplies associated with incontinence for an older child. Another parent told me to check with my insurance company because many will cover those supplies if they are related to a disability and their doctor writes a prescription for them. I had no idea! No one had ever told me this–not the insurance company, the pediatrician, any of our many therapists, etc. But that other mom was right, and I was so grateful she shared her knowledge with me! I belong to a few groups myself and am always amazed at the support, help, and encouragement offered. Finally, be sure to consult with a qualified attorney when setting up funds for him. Yes, it costs money, but it is worth it to ensure everything is done correctly and that the money is not taxed to high heaven or does not disqualify him from help he may need. Good luck! 🙂

my_symphony

I can answer from the therapeutic side of things. Aside from the financial aspect, the absolute best thing you can do is start teaching him life skills. Everything from basic hygiene to making snacks on his own. He may even be able go understand some money concepts. The goal is to make him as independent as possible Able2learn.com and Accessiblechef.com are two wonderful sites with free visuals. You can laminate the images and put them up where appropriate (bathroom, kitchen, etc). Make sure his school is on the same page with you . If he is not getting occupational therapy and vocational training, push for it. Make sure his IEP goals are age appropriate and geared towards his future. Around the age of 14-15, start looking at work/day programs for when he graduates high school. The best programs have long waiting lists. You are 110% doing the right thing for your brother. Keep up the hard work.

LunaLady87