Special Needs Care for Adult Children: Cost of Care

Factors that impact the cost of care for your adult child

Many adults with disabilities are cared for by family members and friends who are often not paid for their services. While home care aides, personal care assistants, special therapies and various living situations may be helpful and necessary, these services can be costly.

Factors Impacting Care Costs

  • Education and experience of caregiver. Caregivers with more medical or specialized training (such as nurses, certified nursing assistants, occupational or physical therapists) as well as those with more years of experience will command higher salaries than, for example, a college caregiver or recent college graduate just starting out in the field.
  • Level or type of care required. A caregiver for a person whose disability requires skilled or total care may earn more than a caregiver whose primary function may be as a companion or to give reminders to a high-functioning adult.

Average Costs of Care

The cost of home care aides, adult day centers and nursing homes varies widely from state to state. Since many factors will affect the actual costs, these numbers below are only a general guide:

  • Home care aides. On average, people pay $19/hour (with a range of $14-27) for a caregiver from a licensed agency. The aides assisted with activities such as bathing, dressing and toileting.
  • Adult day care. The average cost per day is $61 (or $15,250 per year based on five days a week for 50 weeks). The range was from $31/day (or $7,750 per year) to $130/day ($32,500 per year).
  • Nursing homes. For private rooms in licensed nursing homes, the private pay rate per year (not the Medicare or Medicaid reimbursed rate) was on average $77,745 and ranged from $65,000-120,000.

Government Benefits

Your young adult or adult child may be eligible to receive financial assistance through Social Security.

  • Supplemental Security Income (SSI) Disability Payments. Children under age 18 may qualify for SSI payments -- which differ by state -- if they meet Social Security's definition of disability and their (as well as their family's) income and resources are within certain limits. At age 18, a child is considered an adult and different medical and nonmedical rules apply. For example, at this age only the individual's income and resources are considered (not the family's), which means that some people may become eligible for SSI at age 18.
  • Social Security Disability Insurance (SSDI). These payments to adults who have been disabled since childhood are based on a parent's Social Security earnings.

Medicare and Medicaid

Some parents may obtain private health insurance for their adult children. Individuals with disabilities may also be eligible for Medicaid and Medicare programs.

  • Medicaid is the largest source of needs-based health care financial assistance for people with disabilities. The program is both state and federally funded; you should check with your local Medicaid office for eligibility. Some services that might be covered include physician care and prescription medications, as well as nursing home or other long-term care support services.
  • Medicare is a federally funded program providing medical coverage for people age 65 and older, people under 65 with certain disabilities and people of all ages with end-stage renal disease. Depending on a person's eligibility, the different Medicare sections may cover a variety of health benefits, from home health care and skilled nursing facilities - only as long as the patient can be shown to be making progress -- to physician services and prescription medication.

Helpful Links

Department of Health and Human Services: Centers for Medicare and Medicaid Services

Government Benefits Connection for state and eligibility information  

Social Security: Benefits for Children with Disabilities

Deborah Elbaum, M.D. has three children and lives in Massachusetts. She writes about a range of family and medical issues.

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Comments (3)
Photo of Tina W.
Tina W.
I have a 52 year Downs Syndrome brother whom has been diagnosed with autism, Alzheimer's, Parkinson's and now behavior problems. I can't find a place that is willing to help me with providing care for him. He receives ssdd and is on Medicare.

He is in psyche unit at hospital presently because I couldn't find help with him.
Posted: May 12, 2015 at 9:47 AM
Margot Webb
I am the 87 year old mother of a 52 year old daughter, who has emotional problems. She works full time with the Dept. of Recreation as gardener in Los Angeles. She has some physical problems, (knee, had skin cancer and hearing loss ). She is sadly married to a man who is paranoid and screams all the time. He has hurt her in the past, but has stopped the physical part of it, but still punches in walls.
I am worried about her life after my death. She has made friends at work , but never has anyone visit her. Her brother lives in Northern California, and promised to keep his eye out for her, but I am wondering if there is any ongoing help for her, once I am gone . She lives in Valencia, has house payments which constantly rise because he insists on buying things and they re-finance.
The basic problem is her safety and her need to be with friends.She has one or two but seldom sees them, because they don't want to run into her husband.
Can you suggest anything to alleviate my fear, and tell me what is available. Thank you for reading this and for doing such valuable and important work.
Posted: May 11, 2015 at 9:28 PM
My nephew is in ending stages of Duschenne's Muscular Dystrophy and living at home. His father works, and his mother is his caregiver. Both are at the point of a nervous breakdown. Is there a service in Michigan that can provide some in-home support with skilled nursing? Please respond asap. Thank you.
Posted: June 10, 2013 at 8:59 PM
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