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Resources and Training for Families of Adolescents with Disabilities
Any family who has an adult with a disability can tell you that adult service systems are complex. Families need to plan for everything from applying for disability benefits with the federal government, to finding housing, to making sure their health insurance benefits continue into adulthood. They need to plan for appropriate decision-making support, whether that means informal shared decision-making with a family member, or designating a healthcare surrogate or court-appointed guardian once their child turns 18. And as difficult as it is to think about, families need to consider estate planning, and how to ensure their loved one is taken care of in the future.
Kennedy Krieger’s Maryland Center for Developmental Disabilities (MCDD) offers several resources, services, and trainings to help families understand and address these complex issues.
MCDD’s director of adult services and training, Diane Dressler, advises families on how to navigate adult service systems, and provides local and national training for families on transition-related issues, particularly housing. She also works with local and federal agencies to advocate for individuals with disabilities, and was part of the Maryland Partnership for Affordable Housing initiative that resulted in $11 million in funding for Maryland to expand housing for individuals with disabilities.
Dressler advises people to apply at age 18 for the Housing Choice Voucher (Section 8) program, which provides funds for renting an apartment or house. “This is a wonderful program that helps people have affordable housing in a situation where they can control where and with whom they live,” she says. “While waiting lists are long, typically eight to nine years, individuals can use this time to increase their daily living skills, establish credit, and explore resources for in-home supports.”
MCDD also offers the community-based program Project HEAL (Health, Education, Advocacy, and Law), which provides access to advocacy and legal services for children with developmental disabilities and their families.
“If an eligible parent needs help with transition services, we can explain what is required by federal and state law and regulations,” says Maureen van Stone, director of Project HEAL. “Or, we can simply review a child’s IEP with parents and then give them advice.” Since 2005, Project HEAL has provided advocacy and legal services to more than 1,600 families, including many transition-aged students with disabilities.
MCDD’s Resource Finder (resourcefinder.kennedykrieger.org) provides families with information about national, state, and local resources, as well as links to agencies and associations that provide services, information, and programs for people with developmental disabilities. The Resource Finder also coordinates presentations and trainings, such as the Adolescent Transition Lecture Series for families in the community. The lecture series educates individuals with disabilities, parents, family members, clinicians, and community providers about issues important to adolescents and young adults with disabilities.
MCDD also partners with the Maryland Developmental Disabilities Council and other state agencies to offer training and resources to support families of adults with disabilities.