Parents of children with autism and other special needs must prepare in advance for their kids' well-being and long-term care. Consult our guide for advice from special needs experts on the services and options available to your child after high school and beyond.
Sherry Rubin, who lives in Nassau County, Long Island, has been planning for her youngest daughter's future since shortly after her birth. Marisa, who is now 20, has high-functioning autism. Although she's quite verbal and is eager to do many things on her own, her judgment and social skills are impaired. "Marisa was diagnosed at 18 months," Rubin says. "I vowed at that moment to do everything I could to ensure that she lead a happy, fulfilling life long after I'm gone."
Early on, Rubin shifted her focus to her daughter's strengths and, thanks to advice from a pediatric neurologist, improving Marisa's daily living skills - like how to clean and care for herself, and many other activities that able-bodied people complete every day without much thought. It is Rubin's hope that her daughter, by having honed these skills, will be able to find a placement in the best supported-living arrangement possible once she graduates from high school at age 21, the same time she becomes ineligible for many services she currently needs.
The crucial period between when a child ends high school and he or she starts to have more control over his or her own life is scary for most parents. That's why transition planning is supposed to start at age 14. The unfortunate reality, as Rubin notes, is that many parents don't want to think about it until much later.
"Then parents are faced with a rude awakening, when they realize this is way too late," Rubin says.
A Real Guide to Planning
As soon as a child is diagnosed, parents can begin planning for the future with the help of doctors, therapists, lawyers, financial planners, and educators.
Attorney Vincent J. Russo of Vincent J. Russo & Associates, P.C., in Long Island, says it's important for parents to have a comprehensive legal, financial, and care plan in place. He recommends that parents create wills with a supplemental needs trust for their child so that funds are available without compromising government benefit programs that he or she may receive.
An attorney will make sure that the correct financial advisor represents the child's best interests, while a health care proxy delegates health care decisions in case one or both parents are injured. Parents also should appoint a legal guardian for the child. A memorandum of intent, which states what everyone should know about the child, should be created early and updated annually. This includes information for caregivers, lawyers, and financial advisors the child will work with throughout his life, even after the parents are deceased.
Barry C. Laub, the director of Special Care Planning at Advance Wealth Solutions group in Manhattan, is one such advisor. As a former special education teacher, he understands the hurdles that parents face, including the financial fear that comes from spending large sums on treatments and caring for children well into adulthood if they cannot support themselves. But parents do not need to fear accruing large debt or being unable to leave behind money for their child.
"Anyone can plan and prepare," Laub says. "There are many products available to people to bolster their financial well being, and there are easy things anyone can do to alleviate challenges down the road."
Financially responsible parents will work with a trained financial professional, he says, because there is no one-size-fits-all plan that will solve each family's unique challenges. They must also be aware of the timelines that exist for claiming certain services. Many services expire, and changes take place around the time the child reaches adulthood.
Although they can do it at any time, parents should become their child's legal guardian before the child's 18th birthday. After a child reaches adulthood, parents can no longer make decisions, including medical ones, for their child without legal guardianship. Health insurance companies will not give out information unless parents have guardianship, either.
Additionally, adult children must establish eligibility from the Office for People with Developmental Disabilities. Eligibility is earned by taking several tests, including an IQ test, before the child leaves the school system. Parents can also apply for Supplemental Security Income for the disabled child. Once SSI is received, Medicaid, which allows the child to receive OPWDD benefits, automatically kicks in. Although SSI isn't needed until the child turns 18, it can be received beforehand in certain scenarios.
"Don't put anything off till later. And face the fact that there's a disability to deal with," Rubin advises. "Autism is a lifelong disability. Learn to accept, embrace, and work with it. Don't turn a blind eye, expecting the schools to do all the work. You have to do your part. You'll reap the benefits later if you do, and your child will be there to thank you in their hearts, if not in their words."