If you're raising a child with a developmental disability, you know some of the extra pressures that can come with your day-to-day job as a parent.
These pressures can make the task of making arrangements that will allow your child to thrive as an adult seem daunting. But like many aspects of raising a child with a disability, the process of planning for adulthood should start far in advance.
Federal law says youth with disabilities are eligible for special education services until they turn 21. Once the government's no longer required to provide this help, the likelihood of receiving it can look bleak, says Amy Rice, Executive Director of Handi-Crafters, a Pennsylvania nonprofit that provides employment opportunities to people with developmental disabilities and other challenges finding jobs. The issue is that there are only so many resources available – and only so much money to pay for them.
Types of Resources
Generally speaking, the kinds of preparatory resources out there to help kids with disabilities plan for the adulthood fall into a few different categories. Here's the run-down on each of them:
Housing. Agencies across the country run group homes for those with various needs. Valley Village, for example, offers around-the-clock nursing care in some of its homes and more independent arrangements in others. Smith says professionals such as psychologists, nurses and dietitians should be available to group-home residents.
Group homes aren't the only residential resources for those with developmental disabilities. Your child might be able to live in a supervised apartment or with a family that has opened its home to a person with a disability.
Vocational programs. "Unemployment is very high for people with disabilities," Nygren says. Your child may be able to find work through family connections, job coaching for those with disabilities, or special programs specifically dedicated to helping people with disabilities find jobs. Handi-Crafters, for example, provides jobs such as packaging, assembly and janitorial duties.
Even when your child is in middle school, you'll have clues about the type of work he might like. For example, Nygren says a child who likes computers and video games may enjoy working in an arcade. Someone who likes animals could be suited for work at a farm or petting zoo.
Social interaction. The stress that comes with lining up vocational and residential programs can overshadow the importance of arranging a social outlet. But Nygren points out that leaving school also means leaving behind friends and a familiar routine. If nothing replaces that, the results can be heartbreaking. "Then you've got somebody who's got a job and has housing, but is very lonely," she says.
Depending on where you live, these programs could include day trips to local attractions, physical therapy or art and music classes.
This is why experts suggest starting to plan for your child's adulthood when she's about 14. "Nothing moves fast," says Margaret Nygren, Executive Director of the American Association on Intellectual and Developmental Disabilities. "You've got to start early."
Valley Village, which runs 17 group homes and three day programs for developmentally disabled adults in California's San Fernando Valley, is no stranger to long waiting lists. "Somebody could be on that waiting list for years before I have an appropriate opening for them," says Barbara Smith, director of residential programs at Valley Village.
If you start planning for your child's adulthood while she's still in school, the school is the best source of help. Each state also has offices in charge of vocational rehabilitation and other services for those with developmental disabilities. These offices might have websites where you can see what's available in your area.
Nygren adds that enrolling your child in Medicaid is imperative, since this is how most of programs are paid for. Once you've found places that might be suitable for your child, visit several of them to determine which fits best.
Rice cautions that there is rarely a seamless transition for youth with developmental disabilities once they turn 21. Even if the services are available when your child needs them, the money to pay for them may not be.
The most effective way to earn a spot on waiting lists for money is to become well-known to the agencies that administer this funding – and even that's not a guarantee, she says.
You also have to plan for how the rest of your family will adjust once your child leaves school. If your child can't be left alone, that might mean you need a caretaker or a flexible work schedule. Agencies in your community – like Handi-Crafters, which receives some money from donations -- might be able to step in even if no public money is available.
No matter what direction you and your child decide to go in, planning for her future early will help her work through any challenges she may come across. Start early and start talking. Communicating with your child about what she wants to do as an adult will help you identify the steps you need to take that specifically address her disabilities and work with them to do what's best for her.