Ready for Independence
Amanda has a job in a nursery school and is engaged. Erika went to college, wrote a book, and got married. Amanda is mentally challenged; Erika is autistic. Both young women will probably always need some assistance daily, but they can live a relatively independent life.
Thanks to assisted living groups, organizations like American Retirement Corporation (ARC), and government programs, most special needs children will have the opportunity to go into adulthood without being dependent on their parents or guardians. According to David Leatham, executive director of Vital Living in Houston, Texas, the special needs person appreciates having this independence.
“They like having their own space and having independence, just like anyone else,” he says.
The First Step
The first step toward independence comes in school. When the special needs child approaches 13 or 14, parents and school officials should review the child’s Individualized Educational Program (IEP) to ensure it includes lessons in basic living skills. Parents should be aware of the school’s opportunities and encourage their children to take advantage of them. For example, in the State College, Pa., school district, special needs children have the chance to get a part-time job with a district-hired job coach who will stay with the special needs teen for as long as necessary.
Throughout childhood, parents can encourage future independence in different ways. Mary Arneson of Minneapolis, Minn., is the mother of Erika, and she gave her children positive reinforcement and encouraged their interests. This gave Erika the support she needed to write and publish her book about life with autism, Born on the Wrong Planet (Tyborne Hill Publishers, 2005). It can also enforce simple rules and expectations of the child.
“We had a young mother with a child with Down syndrome,” says Cynthia King, executive director of the Vital Living Foundation and a former ARC employee. “He was an easy child to get attached to. Teachers tended to baby him, but his mother insisted on proper behavior and manners. She didn’t want him to be different.
“When parents have certain expectations for their child, the child grows up more able,” King says.
David Leatham tells a story of a couple in their 70s who became the caregivers for a 50-year-old cousin. When the couple first took over his care, the cousin could not bathe himself or do simple chores like taking out the trash because his parents never expected him to do these things. It took patience for the couple, but after a few months, the cousin was able to take on personal responsibilities and chores.
It is important to remember that when it comes to special needs children, independence means different things. It is living alone but having someone come in to cook or take care of the banking. For another, it is holding down a job but not being able to drive. For a third, it is the ability to keep up personal hygiene.
While some schools do a good job of transitioning the special needs child into adulthood, there are several community resources that parents can look to for assistance. For those who wish to live outside of the family home, national organizations like ARC and local nonprofit organizations provide different options.
Group homes are family-style houses, often in an average residential neighborhood. How many people live in the house is dependent on the organization that runs the home and the community. Group homes have caregivers on-site 24 hours a day.
For those who can live without constant care, caseworkers can be assigned to help the special needs adult with the day-to-day routine. Caseworkers may be called upon to provide meals or administer medication or help with banking and grocery shopping.
Medicaid covers much, if not all, of the cost of these services. However, Leatham is quick to point out that there may be a waiting list, especially housing. King and Leatham also stress that services for special needs persons are not national. If a family plans to move to a new state, parents should investigate what services are available and what services may be transferable.
Financial and Legal Matters
Financial and legal issues are other important steps parents need to investigate. Bruce Sham of Fort Washington, Pa., first assisted his daughter Amanda in finding a job at a nursery school. He then made sure her income was low enough not to jeopardize her Supplemental Security Income (SSI) benefits. “We couldn’t go over the government allotment or she’d lose her insurance,” Sham says.
Realizing that Amanda will likely outlive her parents, Sham also prepared for her legal future. Beyond the standard will and trust funds, Sham also created a letter of intent. “The letter of intent outlines the special needs child’s routines, religious beliefs, special quirks and other information that non-family members should know,” says Sham.
Not every special needs child will hold a job, go to college or write a book. But any sense of self-reliance that can be instilled in the special needs child is the first step to promoting healthy, happy adulthood.