But for Paul, there’s a twist. She not only thinks about her son’s interest to continue his education at a visual arts college and how she will afford it, but how the family will also be able to establish a financial future beyond college for Matthew, who has autism. Matthew will likely need some type of supportive care his entire life, and government services may not be available for him due to lack of funding and other issues that may make him ineligible.
Like Paul, nearly three quarters of families living with autism and other disabilities are worried about their child’s financial future, but most have done little to plan for the time when their child with a disability becomes an adult, according to recent studies undertaken jointly by Easter Seals and the Massachusetts Mutual Life Insurance Company (MassMutual).
The “Living with Disabilities” study was released in 2010 and “Living with Autism” in 2008.
Planning for the financial future remains a tough challenge for families and for their local communities, according to “Autism: Coming of Age” a documentary sponsored by MassMutual, which discusses how the social service system and families will handle the challenges of an estimated 800,000 children with autism poised to enter adulthood.
Asking questions early and discussing options is a good way for families to start the process of identifying solutions and making the best plan possible, says William Van Evera, a MassMutual special care planner in Albany, N.Y.
He suggests families ask the following questions to get the dialog started:
* Do you know who will care for your child with special needs when you are no longer able to provide that care?
* Are you certain that the planning you may have already done won’t “unintentionally disqualify” your child with special needs from receiving government benefits?
* Have you determined whether or not a supplemental needs trust will be appropriate for your child with special needs, and if yes, have you determined how it will be funded?
* Are you concerned that the future cost of “special care” for your child with special needs may negatively impact your own lifestyle during your retirement years?
* Do you have a written plan in place that specifies how your child with special needs is ultimately to be cared for?
Paul, of Massachusetts, says the future is coming for her and Matthew faster than she realized after watching the documentary.
Families with children having autism approaching adulthood will discover there is no one set pattern for everyone.
“Reaching out to a qualified professional who understands the special needs community and their challenges is critical,” says John Chandler, senior vice president and chief marketing officer at MassMutual. “Our SpecialCare program is designed to specifically meet the needs of families with special needs and we have developed the Chartered Special Needs Consultant (ChSNC) designation, launched in conjunction with The American College, to better prepare financial professionals to help as well.”
Chandler says sponsoring the documentary was important because it allowed family voices to be heard.
“We know first-hand from our special care planners and the families they serve how important it is to give voice to this issue,” he says.
The documentary presents three stories of adults with autism:
* Dan Ryan lives at a residential school where he is learning how to be as independent as possible as an adult. He is learning banking and food shopping skills.
* Doug Murray lives at home with his parents and siblings, but wants to live on his own. He has a job in a hotel doing light maintenance and vacuuming, showing up to work early every day after taking two buses.
* Tomas Espinosa lives in his own home with 24/7 care not far from his grandparents. He is non-verbal, and his roommate makes sure Tomas is safe overnight. Espinosa doesn’t work, and receives disability income from Social Security and a Section 8 subsidy to help with rent.
For a listing of times in your area when you can catch “Autism: Coming of Age” contact your local PBS affiliate. MassMutual also posts air dates as they become available at www.facebook.com/massmutual. Organizations can also set up a private showing for groups of 25 people or larger by emailing firstname.lastname@example.org.