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Special Needs Care for Adult Children: Cost of Care

Once you have gone over your care options, it is important to take some of these factors that will impact the cost of special needs care for your adult child into consideration.

Image via Getty Images/Westend61

In the last chapter, we outlined types of care options available to adults with disabilities. These types of care can be costly. According to our research:


Average Costs of Care

  • Personal care assistants. On average, people pay $19/hour (with a range of $14-27) for a caregiver from a licensed agency. Assistants recruited directly generally cost the same amount (this figure is largely based on Medicaid reimbursement rates).

  • Adult day programs. 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).

  • Institutional care. For private rooms in licensed nursing homes, the private pay rate per year (not the Medicaid reimbursed rate) was on average $77,745 and ranged from $65,000-120,000.

As you can see, disability care is expensive. What’s more, private insurance typically does not cover these kinds of care. Long-term care insurance may cover such services, but if you already need the care when you try to purchase it you may not be approved. However, the cost of care can be subsidized by government benefits -- mainly through Medicaid.


What Is Medicaid?

Medicaid is a federal and state health insurance program for people with low income and limited financial assets. Like private insurance, Medicaid covers physician care and prescription medications; unlike private insurance, Medicaid covers personal care assistants and other kinds of long-term care.  

If an adult has a permanent disability, they can qualify for Medicaid if they ALSO meet income and asset restrictions. Those restrictions vary from state to state, but they can be as low as an income of $735 a month and no more than $2000 in assets. Other states have programs that allow Medicaid recipients with disabilities to earn more without losing their care benefits. Check with your local Medicaid office to find out your state’s rules.


Other Government Disability Benefits:

Supplemental Security Income (SSI). SSI makes monthly payments -- which differ by state -- to disabled adults over 18 who are low-income and have few financial resources. In most states if someone receives SSI, they also qualify for Medicaid.

Someone who received SSI as a child may continue to qualify after they turn 18. If they weren’t eligible as a child, they may qualify once they become an adult, so age 18 is a good time to look into this possibility. For an adult to qualify in 2017, they must meet the following criteria:

  • Meet Social Security’s definition of disability

  • Household income is under $735 a month

  • Total financial assets are under $2000 (with a few exceptions, such as their home and car).

Social Security Disability Insurance (SSDI). There are two ways to access SSDI benefits as an adult: 1) if a person has a qualifying work history, they may receive benefits, OR 2) a person may receive benefits if they meet the following criteria:

  • Became disabled before turning 22

  • Currently over 18

  • Unmarried, OR married to someone else who also receives SSDI

  • Have a parent who receives Social Security retirement or disability benefits, OR have a deceased parent with a qualifying work history

  • Social Security determines that disability prevents them from earning more than $1,170 a month. Unlike SSI, SSDI allows recipients to earn any amount of income while they receive benefits, but they still run the risk of losing their qualification if they earn too much.


Private financing options:

This page from the U.S. Department of Health and Human services has information on other ways people may finance the cost of care.

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

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