Q: My child is only 14 years old, but I already realize he will not be able to live with me forever. How do I plan for his future housing options?
A: I commend you on thinking about where your child may live in the future. We still find that 70% of adults with intellectual and developmental disabilities live with an aging parent. This situation makes it quite stressful on the parent, but it also places stress on other family members who then need to step in and make decisions about what will happen next. Congratulations on thinking ahead!
The adult living options for your child will depend on many factors, including:
1. The amount of daily support your child may need
- If your child needs 24-hour supervision, then you will need them to be in a situation that has someone living with them. This can take many forms. Your child could live in a three-bedroom apartment with one roommate, and a room that is occupied by a direct support professional that provides the necessary level of oversight; or they could live with another family member who is licensed and trained to care for your child.
- If your child does not need 24-hour supervision, the options expand to include living arrangements with someone nearby to check in on your child—whether in a supported apartment or even a private residence with support.
2. Government benefits
- The government benefits your child qualifies for can dictate the options available to them, and also the amount covered by the benefits.
- Changes to government benefits, either positive or negative (meaning more resources or reduced resources), will have a drastic impact on your child’s housing options, especially if you will solely rely on the government for your child’s future support.
3. Family resources
- Yes, this does mean money and assets. It is important to determine the housing options that are available today, and the options that may be available in the future—and the associated costs of these options. Due to the massive shortage in adult housing options for individuals with disabilities, families, organizations, communities, and developers are creating innovative living situations.
For instance, there is a community built in Arizona that includes houses, a community center, a full-time director, and overnight staff all in order to promote inclusion and safety. These types of communities are being built around the United States and the world for adults with disabilities. However, most of these communities do not take government benefits as their sole revenue stream (because it is simply not enough money to sustain these communities), so there is a heavy reliance on private pay (money from the family).
- Another area of family resources is people. Does your child have siblings? If so, will they be involved? How involved do you want them to be? Do you expect them to have your child move in with them and their future family? The answer to these questions will help determine the amount of money you will need for your child’s lifetime support.
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The great news about your child’s future housing is that more and more options are being developed. Communities, developers, non-profits, and families are all banding together to create solutions for children like your 14-year-old. You can have confidence that options will be available, but you must ensure that you, your child and your family are prepared to take advantage of those options. To be prepared for the future, it means you must take action today. Devise a plan, begin the hard work of executing that plan, and then manage that plan!
This article was featured in Issue 120 – Epilepsy: High Risk for ASD Kids