This is a blog post by Marianne Sullivan, Assistant Director of National Outreach and Resources at Autism Speaks, and the mother of a young adult with autism.
This year on Mother’s Day I will celebrate something very special: the gift of independent living for my 18-year-old son, Hunter, who is challenged by severe autism.
Several months ago, Hunter moved to a new home in our community that was designed with supportive living services. While there was a lot of anxiety as we approached this move, the staff assisted in a smooth transition. Living in his new home, Hunter walks to the Coryell Autism Center where he is focused on acquiring new job skills, and to neighborhood stores. Hunter, like any other 18-year-old, shows great pride in his new independence. When I stop by to see him or when he comes to visit me, it becomes clear we have a new relationship.
For the past 16 years, Hunter struggled to overcome severe challenges posed by his autism. He made some remarkable gains through a school that our community developed for children like him. Adolescence was difficult, like for any teen, and he tried to assert independence while still being very dependent in many areas. As he began to develop community living skills like money management, grocery shopping, and participation in community activities, we realized how much more there was that needed to be addressed. It was during this time that we began to plan for the creation of a new residential model where independent living skills could be more systematically practiced on a daily basis.
Hunter endured another challenge during this period. After a 20 year marriage, his father and I separated and then divorced. Our entire family went through a long period of emotional turmoil. Ultimately, Hunter has been able to adjust to this and, like many other teens whose parents divorce, he has grown from this life process.
For those of you who might be thinking about creating an independent living situation for your teen, let me give some background to aid you in exploring your options. When Hunter turned 18, we applied for SSI from Social Security so he would have his own funds for Medicare and health insurance coverage. We also applied to the California Regional Center for services that would assist him to live on his own. Supportive Living Services (SLS) is a state program that offers a range of services to adults with developmental disabilities who, through the Individual Program Plan (IPP) process, are given help to live in homes they themselves own or lease in the community. SLS may include:
· Assistance with locating, selecting and moving into a new home in the community
· Support to improve one’s ability in common daily living activities, meal planning, personal finance management, etc.
· Encouragement to become participating member in community life through volunteer or special job responsibilities
Finally, we were able to apply for and receive Federal Housing Section 8 assistance that subsidizes the rent he pays to the landlord of his new home.
As I reflect back this Mother’s Day on all that has happened, I take a deep breath and then can’t help but smile. I am so proud of all the work Hunter has done and grateful for all those who have helped our family get to this point. Like every mother, I continue to worry about the future but I also know that Hunter is prepared for challenges ahead.
From one mother to another, I wish a very Happy Mother’s Day to you!