By Andrea K. Kovar, Attorney, Generation Law

In the U.S. today, there are nearly 1 million households where an adult child with intellectual and developmental disabilities (I/DD) is living with caregivers age 60 or older.  What happens to an adult child with I/DD once a parent caregiver dies or is no longer able to provide care depends greatly on advance planning. Recognizing the difficulty and importance of future planning, here are some of the main issues parent caregivers must address to plan for the future as adult children with I/DD and their parental caregivers age.


Adult children with I/DD frequently need a parent or caregiver to continue to care for them, manage finances, and make medical decisions even after turning 18. To legally continue to act on your adult child’s behalf (assuming the child is not competent), you must file a petition for guardianship with your county probate court. Since the process of filing for guardianship can be challenging and time-consuming, requiring formal legal documentation and complicated filing procedures, start the process before your child turns 18. Secure a properly written medical opinion and physician’s report to support your guardianship request.

If your child is competent but wants you to continue making medical and financial decisions on his or her behalf, make sure you have powers of attorney for property and healthcare executed when the child turns 18. In either case, we highly recommend that you consult with an attorney for assistance.

Public Benefits

An important part of planning for future care involves securing resources to provide medical and financial assistance to the adult child with I/DD. The Illinois Department of Healthcare and Family Services may provide health care, medical benefits, and insurance. Benefits are available to residents of Illinois who have a permanent disability and meet certain other eligibility criteria, including income and asset limits. If a child qualifies, Illinois will provide access to comprehensive health care. The state can help pay for prescription drugs, doctor visits, hospital care, emergency room coverage, durable medical equipment, long-term care, and other healthcare services. Visit or call an Illinois Department of Human Services Family Community Resource Center for more information.

Several benefits programs provide financial assistance to people living with disabilities. Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) are the two most common federal programs the Social Security Administration (SSA) offers. SSI provides minimum basic financial assistance to people with disabilities (regardless of age) with very limited income and resources. SSDI supports individuals who are disabled and have a qualifying work history, either through their own employment or a family member (i.e., a spouse or parent).

It is critical that parent caregivers are aware of, and apply for, these benefits. Your disabled child may not be eligible for SSI while a minor (younger than age 18) because SSA will look to your earnings and assets to determine the child’s eligibility. When your disabled child turns 18 and is legally an adult, however, SSA will assess the child’s SSI eligibility based on his or her income and assets.

If a person is deemed disabled by the SSA prior to age 22, then that disabled child will be eligible to receive SSDI based on his or her parent’s earnings record upon the disability or death of the parent. SSDI benefits can be substantially higher than SSI benefits (for 2020, SSI is capped at $783/month for eligible individuals).

Estate Planning and Special Needs/Supplemental Needs Trust

Public assistance programs and services often impose income and asset limits on eligibility. For example, to qualify for SSI, your child must have less than $2,000 in assets. A child with I/DD who receives an inheritance or is designated the beneficiary of a life insurance policy may be inadvertently disqualified from receiving public benefits by a well-meaning family member or loved one who leaves him or her money at death. You can avoid unfortunate situations like these by establishing an estate plan that utilizes special needs or supplemental needs trusts to hold assets for the benefit of a child with I/DD. Properly drafted special needs or supplemental needs trusts are one of the only mechanisms available to set aside funds for the benefit of a disabled child without affecting eligibility for means-tested public assistance programs and services. It is imperative that you consult an estate planning attorney familiar with Medicare, Medicaid, Social Security, and SSI. The right attorney can draft the necessary documents to address how you want your property, finances, health care, and care of your adult child with I/DD handled after your death and/or during incapacity. In addition, the attorney can advise you on the other tools available (e.g., ABLE accounts, life insurance) for leaving assets to a disabled child without jeopardizing that child’s eligibility for government benefits.

Housing Arrangements

One of the most important things that aging parents can do for an adult child with I/DD who will continue to require ongoing supervised care after the last caregiver parent dies is secure stable housing. This may mean that parents transition a child to a living arrangement away from the home before the death of the last living parent caregiver. Illinois offers several residential living options that provide 24-hour care in a variety of settings for children and adults who have I/DD. Most are home-like settings integrated in the communities where individuals have access to on-site direct support staff and can engage in developmental programs and community amenities, such as stores, libraries, and restaurants. The first and most important step a parent caregiver can take to secure stable housing is to register with the Waiting List/Prioritization of Urgency of Need Services (PUNS) database waiting list. To register, you must meet with an Independent Service Coordination Agency (ISC) for pre-admission screening to see if you are eligible for services.

Planning for the Future

It may seem counterintuitive, but properly planning for a time when you aren’t around to care for your adult child with I/DD can go a long way in bringing you peace of mind. The process can feel daunting, but this is definitely a case where knowledge is power. Understanding your child’s options for receiving assistance – like housing, caregiver resources, and public/government  benefits – is an important step forward in securing the quality of life and dignity he or she deserves.

Generation Law offers special needs planning services to help families navigate the process. If you have questions about your family’s situation, give us a call.