Special Needs Care for Adult Children: Care Options

Various options exist depending on the child's level of need and the family situation. Some adults with special needs may be able to live independently, others may require increased support.

Care Options Available

• Family members. Many adult children live at home with family members as their primary care providers. According to one web source, 76% of individuals with developmental disabilities live at home. In a quarter of these situations, the average age of the adult child was 38; caregivers were age 60 or older.

• Home health aides or personal care attendants. Depending on the child's level of need, these providers come into the home to help family members in a variety of ways. In addition to providing respite to family members and being a companion to the adult child, they assist with duties requiring more physical strength or perform specific assignments such as bathing and dressing.

• Community-based homes and supported living arrangements. Adults living in group homes enjoy some independence, but receive support as necessary depending on their needs. Caregivers living or working at these homes provide a range of services, from supervision to help with medication to advice on getting to work and dressing appropriately.

• Independent living arrangements. Depending on their situation, some adults may be able to live independently with some form of additional support. For example, they may need someone to help them for a few hours a day with activities of daily living, transportation, meals, etc.

• Day programs. Once they are no longer attending school, adults can benefit from day programs appropriate for their level of ability. Providing structure to the day through a variety of educational services, these programs help adults work on life skills while offering social opportunities.

• Long-term care facilities. Some adult children with special needs require extensive support around the clock.  In cases such as this, parents may feel their child's needs are best served in a long-term, live-in, care facility.

• Assistive technology. There's a wealth of assistive technology, from software to sports gear, which may help your adult child be more independent. Your child's physician can help steer you in the right direction. 

Needs Change Over Time

One of the main challenges parents of adult children with special needs face is that of their own age and health. It's not uncommon for parents to care for their adult children well into their 70's, even into their 80's. The caregiving picture may change dramatically with a parent's illness. 

As parents age, they may be the ones in need of senior care, while their adult child with special needs continues to require the support of caregivers.  Planning ahead and evaluating caregiving options prior to a crisis can alleviate some of the stress that is inevitable when the balance of care shifts within a family.

Deborah Elbaum, M.D. lives in Massachusetts and has three children.