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Taking care of a special needs adult

Chris Farrell Apr 12, 2011

Question: We have an 18 yo daughter who suffers severely from anxiety. This has prevented her so far from completing high school. She has twice spent time in a mental health facility. At their recommendation, we are currently trying to get her into a therapeutic school, either day or boarding. Two years ago, after 10th grade, she was unable to return to her school, and decided to try a small private school near her grandparents, but far from home (another state). Her father and I both felt this might be a good move for her, but one of us had to be with her. I quit my job and she and I have lived with my parents since then. This is no longer working as I indicated, and I need to quit my new job and move back home with her, as there are no therapeutic schools near here. This is causing some financial hardship.

She has a college fund we could tap for her therapeutic school if we can’t get a school system to pay for it. My husband is self-employed and receives a pension and family health insurance from his previous employer. We both have reasonable retirement accounts. Are any of us entitled to social security for caring for a dependent with mental health issues? Is there anything else you can think of that we should be doing to ease the financial situation and protect our/her present and future? Naomi, Surry, ME

Answer: You’ve done a lot for your daughter. Now that she’s 18 she’s considered an adult and it raises a whole new list of issues and challenges. You’re also right to want to protect your financial circumstances, especially as you get older. It’s important for you and your husband to address a number of estate planning issues.

For instance, at 18 your daughter is an adult. Do you think you should apply for guardianship so that you have the legal right to help her with medical decisions and critical financial matters. If you don’t think that’s necessary, what about establishing health care directives? Should you carry more life insurance than the typical aging parent? Does it make sense for you to set up a special needs trust so that your daughter can continue to take advantage of government programs while still having money set aside to pay for additional benefits? For instance, a special needs trust allows you to save for your child without disqualifying her from Medicaid benefits.

To get practical answers, I would set up meetings with both a lawyer and a financial planner. They should have an expertise in dealing with the disabled. Two organizations that might provide a useful starting point are the Special Needs Alliance and Special Needs Answers.

Among the questions I would be asking are:

Once she does get out of school will she work and how will that affect her benefits (again, assuming she qualifies). What nonprofits in your area might work with her in getting a job.

You can’t get Social Security for taking care of her, but it’s worth seeing if she might end up qualifying for Social Security Disability Insurance payments (SSDI). Since she hasn’t worked she would qualify off your benefits (and there is no cut in your benefits, by the way). You can start learning more about the program here.

I realize that I’m asking a lot of questions without giving answers. One reason is that the answers all depend on judgments about your daughter’s situation. Another factor is that the government rules and nonprofit programs can vary by state.

There are a number of federal, states, and local government resources, as well as nonprofits, that offer programs your daughter might benefit from. Yet unless you’re on top of the situation, unless you have good records and documentation, unless you reach out and ask other families, join with other families and find out what is possible, it’s easy to get ignored. I think it will be even tougher in coming years with all the government cutbacks,

So, what existing programs will be most helpful for your daughter in the years ahead?

The National Institute of Mental Health is a resource: You can find out about more government benefits here, too. And support groups can be a mine of information. You can find a number of support groups in your area from the nonprofit, Freedomfromfear.

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