What Parents Providing Care for Adult Children with Developmental Disabilities Should Know


September 27, 2023

Care for Adult Children with Developmental Disabilities

The types of disabilities may range from intellectual, cerebral palsy, autism, and neurological impairments. These may delay or affect the normal physical, cognitive, learning, language or behavioral development process at an early age and may continue through adulthood. Those with these conditions may need assistance with: 

  • Activities of daily living, such as bathing, dressing and eating 

  • Independent activities of daily living, such meal preparation and shopping 

  • Social interaction 

  • General supervision related to safety 

Providing this assistance typically involves constant planning for parents and may result in fatigue, stress and exhaustion.  

The challenges of aging parents caring for an adult child  

According to The Arc, a national community-based organization which advocates for people with intellectual and developmental disabilities, there are almost one million families in which adults are being cared for by aging caregivers, and about two-thirds of these families have no future care plans in place. Parents and their adult children may have aged together and supported one another, but each have their own growing health concerns and limitations. Aging parents face increasing concerns as to who will care for their child, where their child will live and what types of services will support their child. Some are connected to the disability community, while others have been challenged by the lack of funding and long waiting lists for services. In fact, a survey conducted by The Arc found that the most common concerns for parents caring for adult children were related to: 

  • Lack of quality support 

  • Increased social isolation 

  • Having no one to help 

  • Institutional placement 

  • Health deterioration

  • Abuse, neglect and financial exploitation 

At the same time, parents caring for adult children find that they are aging as well and face the growing concerns about their own health, well-being and care situations.  

Where to turn to for help

In the interim, there is hope that gives aging parents the strength to overcome these obstacles. Here are several options that may help:  

  • Include other family members and friends, no matter how small the task. Perhaps others can help by providing respite, delivering a meal, running an errand or providing transportation. It’s also important to be willing to accept help when it is offered, whether it’s from other family members or professionals.  

  • Explore the possibility of an adult day program if a change in living arrangements is not possible for the time-being.  

  • Use assistive devices that may help a loved one with reminders, such as taking medications on time.  

  • Check local agencies to identify support groups that will help us share experiences, learn together and strengthen our emotional well-being.  

  • Be a vigilant advocate when seeking help from a variety of public and private agencies.

  • Work on creating our connections, building our lifelines, adding layers to our support team and coming up with back-up plans just in case a piece of the plan falls through. By breaking down what we need to do step-by-step, our future care plan for both us and a loved one will more easily fall into place. 

County agencies focused on assisting adults and children with developmental disabilities, sometimes referred to as Boards, provide assessment, service planning and coordination services. In addition, they provide oversight and assistance to several providers in our area that may help with care for our adult children with developmental disabilities, such as by covering the cost of services to help them remain in our home, with a roommate or in another shared living residence. The agencies assign a Service and Support Administrator to oversee services and help identify other community programs in which families may be eligible. To easily locate your state’s intellectual or developmental disabilities agency, visit the National Association of State Directors of Developmental Disabilities Services (NASDDDS) website. The listing provides names of state agencies to contact and seek further information for the county agency.  

Additional resources include:

  • The Arc. Programs vary by Chapter and may include additional supportive services for homemaker and personal care, assistive technologies, advocacy and education. In addition, The Arc offers a Center for Future Planning that helps to support families with future care planning, decision-making, housing options and financial planning.

  • Easterseals, an organization that provides services for individuals with disabilities and special needs, including their families. Programs vary by location and may include adult day services, home care, senior companion programs, therapy, vocational programming and community education.  

Source: WellMed Charitable Foundation. Written by Branka Primetica, MSW, and Lauri Scharf, LSW, MSHS 

We hope this information is helpful to you in the important work you do as a family caregiver.
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