Autism affects 1 in 88 children and 1 in 54 boys. The number of children with Autism who will be transitioning from the school system into dependent adulthood over the next 15 years will be about 395,000. According to a research report by the SAGE Crossing Foundation, the cost to care for these individuals “will increase by 2028 to an estimated 18 billion in current dollars – on top of the adults already in the system today.”
While many of these individuals will have family support for the bulk of their adult life, just as many will be placed in group homes, activity care centers or work programs that are funded by state dollars. Most individuals are already in the state system via social security disability income, and are eligible for state funded medical benefits. While the basic needs for living may be met, the advocacy for the quality of care is a serious issue.
As the mother of a young man with Autism, I am beginning to feel the anxiety of needing to make the right decisions for my son’s future. He will graduate at age 22 and most likely move into a day program where he will participate in recreational activities and training in basic living skills. As long as his father and I are alive and active in his care giving there is not much cause for concern. Everything changes, however, when we become incapacitated or deceased. We want to have some peace of mind that he will have sufficient income to have the best loving care possible.
My career is in supported employment for adults with disabilities. I have seen the good, the bad and the ugly through my years in this field. I have listened to distraught young adults who are being mistreated by their roommates or care givers, or whose personal items and money are being taken by someone entrusted with their care. In my son’s case, there are siblings who will always be active in his life and watching out for the quality of his care. But it is still a daunting task to navigate the world of finance, insurance, trust funds and all that is necessary to prepare for my son’s future security. Luckily, informative websites and companies such as Autism Speaks, Genworth Financial and Autism-Society.org assisted in my research.
A family trust fund is one way we have decided to provide for his needs. Until recently, any money that had been designated for an individual’s care would be cause for the denial of benefits, including medical. Fortunately there is now a Special Needs Trust which is funded by a third party (sibling, aunt, uncle, etc.) and coordinated through the family estate. According to Joanne Marcus of Commonwealth Community Trust, it is best to seek professional advice. She says, “…trusts require that a trustee be designated,” says Marcus. “The trustee manages and invests the funds for the trust and makes disbursements that are for the sole benefit of the beneficiary. The trustee is also responsible for reporting to the government agencies providing the benefits and staying abreast of changing regulations.”
Our family is fortunate enough to have a broad support base and the knowledge necessary to bring about the best future for my son. Not everyone has that opportunity. What will make this dramatic surge in our dependent population a little less challenging is to establish simplified methods to assist families in accessing and implementing the plan that will work best for their loved one. Education and training for public and private resource agencies, caregivers and social workers will be necessary to embrace the number of families in need between now and 2026.
As we continue to move our country toward a more compassionate, inclusive system, let us make sure we include the population that cannot always find its voice.
I am a writer, mother and grandmother living in California with my wonderful husband and best friend. My four adult children bring me joy and have filled my life with purpose and blessings beyond measure. I have two grandchildren (so far…) who add an extra layer of beauty and love to my life. My three oldest children are confident, successful young ladies who continue to amaze me. My son is the youngest, and his adventures in Autism have led us all through a lesson in patience and compassion that we would not have otherwise experienced without him. Life is good. I never run out of material, because my life has taken me on so many journeys that I may not have enough life time left to share them all on paper. This is a good thing, it leaves me with a sense of purpose and urgency to tell my story or share someone else’s with the world. My blog is www.evescrossing.com and my book is I Have A Breast.
Supported by Genworth Financial