Purse Strings Approved Professional
Advocating with Your Disabled
Your child will need to be allowed to have and share their own voice, regardless of their ability to be independent. Your child’s adulthood is a time to lead from behind.
Prior to High School completion, your child becomes an adult. This happens to all of us who are parents. If your child has a disability, you have the added role to continue to advocate with them for participation in a meaningful adult life. As your child becomes an adult, your advocacy moves beyond education and inclusion to include expanding their circle of support for them to be as independent as possible. This includes helping your child manage financing and finding the supports they need to be successful. Your child will need to be allowed to have and share their own voice, regardless of their ability to be independent. Your child’s adulthood is a time to lead from behind.
While the last two (plus) years of education are meant to prepare your child for employment, the realities vary. You may be working together to find the next work training program or sending your child to college with their peers. At the time school officially stops, you may get involved to find your child meaningful work. Listen to your child when they say they don’t want your help. Find someone else they do want help from and make room for new relationships in their lives.
A significant component to independence is being able to get from one place to another.
Does your teen/young adult want to drive? Find them a support team, a coach or occupational therapist who can guide them in learning to drive safely. Help them with any automobile adaptations needed to drive safely. If they are not interested in driving or cannot, what is the next “least restrictive” way they can travel independent of you? Do you have a local public transit system they can learn to use? Is biking accessible? Is a friend available to drive your child to work, grocery shopping, or other activities? Can they hire a private driver to take them to work? Programs such as “Metro access” in city centers can have a shared van service, if all other forms don’t work for your child. Help your child learn to track any transportation expenses related to medical and employment to ensure that those expenses are removed for you son or daughter’s countable income while using SSI or SSDI.
3. Independent Living
One of the scariest mistakes you can make is not planning for future housing and care, even if planning takes decades. When your child says they want to move out, allow them to take the lead. Some will want to move next door. Others will want their own apartment in a different state where they went to college and found their first job. Set up times to visit homes, apartments and co-ops together and talk together about what they will need to be successful.
4. Speak with a Financial Advisor
Dig into the realities of what things will cost for that independence. Learn what you can about the adult Medicaid services your child will be eligible for, including social work and job supports. Talk to advisors who understand Medicaid, SSI, SSDI and the Disabled Adult Child Benefit of Social Security, and Medicare, to make sure you understand ways your child can and should receive supports and work at the same time. Speak with a financial advisor who listens to you about your child’s care needs. Resources like the Academy of Special Needs Planners can be a great resource to find professionals who make working with families with support needs their life’s work. Financial planners look at your full financial picture, identifying ways to solidify your support for your loved ones through your own income and savings, as well as your child’s income and work potential. They will project all financial resources, find opportunities within your community for financial support, and help you have more control of the uncertainties in your life with greater clarity. Financial advisors work with accountants, lawyers, insurance agents, and loan providers to make sure your goals are coordinated, achievable, and follow your intent.
5. Expanding your Support Team
Continuously look for ways to widen your community of support. Transportation services and your respite care team can open up opportunities for relationships outside the home if your adult child is not working. If your care team will be with your child for a long time, work on getting know who they are and how to best incorporate them well into your child’s life. Does your child have other meaningful friendships? Give your closest friends the opportunity to take your son or daughter out for lunch or coffee as you would do with your younger friends and colleges. Do they have someone in their peer group they can spend time with such as a friend from school?
You will need to trust your community of support at the end of your life to know that your child has people who know them intimately, know their support needs, and can prioritize their growth as an individual. The most important thing you can do to advocate with your child is to watch them have relationships beyond your home.
This article is written by Liz Yoder
I support and cheer on families with unique needs, with a special focus on the disability community. I strive to enhance their quality of life and their future. There are enough people telling you what you can’t do. Let me help you find a path to what you can.
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