Updated: Jun 26
A listserve on which I participate featured a recent exchange among some parents of adults with intellectual and developmental disabilities. The discussion was sparked when one parent discussed his experience trying to interact with his adult child under the COVID-19 “shelter in place” restrictions. Another parent then asked if it was necessary for an adult child to move into a group home rather than staying in the parental home forever. Other parents jumped into the conversation. Some explained how their children had been excited to move out. Others explained how they had to try more than one situation. But by far the most oft-repeated advice was to take the time to find a living situation that fits what the person with a disability wants and needs.
Many people with disabilities reaching adulthood in the 21st century have expectations for their adult lives that far exceed the “eight-person group home with sheltered workshop” that was the norm twenty years ago. People with disabilities expect to live in a dwelling of their choice, either by themselves or with roommates or housemates of their choice. They expect privacy and the freedom to decorate the house and the yard as they please as well as own the gadgets and appliances they like. They may want to keep a pet too. They expect to maintain ties to their families, friends, teams, social/recreational groups, and houses of worship. They expect to have volunteer or paid jobs or otherwise have meaningful daytime activities, suited to their individual skills and interests. They expect to make decisions about when to get up and go to sleep, when to go out or stay in and what to eat. They may expect to have a romantic partner as well. So, in complete agreement with the listserve consensus, the first step in considering where the person with a disability will live as an adult is for that person, with support, to be clear on what s/he wants. (photo by Sandy Millar via Unsplash).
My own son, who is almost twelve, keeps proposing to move out of our home and into his clubhouse, where (he believes) he can do as he wants when he wants. He announced this to me most recently, while making a snack of toast using the bread, butter and toaster that we, his parents, bought and electricity that we, his parents, pay for. When I pointed this out, he got cross. He’s not convinced that he couldn’t support himself with his plan to mow lawns (with our lawnmower) once the virus-related restrictions end. But again, he’s not quite twelve. Life, as we the parents know, is expensive. It’s even more expensive for people with disabilities, who need to pay for support workers and services on top of the rent or mortgage, utilities, food, transportation, and recreation that we all need to pay. This is why helping people with disabilities to access public benefits has become a significant aspect of my practice. To pay for a quality adult life, most people with disabilities need to put together their own work earnings PLUS all available government benefits PLUS supplemental support from their parents or other family members.
Social Security benefits are pretty straightforward. Depending on her/his own work history and the age, life stage, and earnings history of her/his parents, a person with a disability may be able to receive Supplemental Security Income (SSI) paying a maximum of $783/month or Social Security Disability Insurance (SSDI) on their own or their parent’s work record that may top out at $1,500/month. Social Security benefits typically contribute to covering household expenses. The more complex piece of the equation is how to pay for services and supports. The cost of these is frequently too high to pay out of pocket for an extended period of time. Most adult-related disability support services in most states are paid for with Medicaid dollars through channels broadly termed “Medicaid waivers” because the requirement that a person live in a nursing facility has been “waived”. Each state’s waivers are structured differently. In order to use your state’s waivers to support the life that your family member wants and needs, you need to understand the waiver’s permutations and limitations.
I’ll use my home state of Illinois as an example for this because, unlike some states that have broad, highly customizable, and self-directed waivers, ours here are pretty narrowly defined. The Illinois waivers that pay for “Residential Habilitation”—fancy language for daily life support—are called “Community Integrated Living Arrangement” or “CILA” waivers. CILA is broadly described as:
A living arrangement, provided to Adult Waiver participants in a group home, family home or apartment, where eight or fewer unrelated adults with developmental disabilities reside under supervision of the community developmental services agency. Residents receive a comprehensive individualized array of residential habilitation, personal support services, and supports under the direction of a community support team within the local agency. (IL Department of Human Services website)
In casual parlance, “CILA” is often conflated with “group home” with the implication of “large group home”. However, it is important to note that the definition covers anywhere from one person to eight people residing in a home that may be owned or controlled by an agency but may also be owned or controlled by the person with a disability or by her/his family. Thus, there are the following permutations:
24-hour CILA. Paid staff (typically in shifts) are always at the home whenever one or more of the residents is home. Note that the defining characteristic is the amount of required support and the definition says nothing about the number of people living together in the arrangement or which entity owns the dwelling. It is entirely possible to have 24-hour CILA supports for two people or even one person, but the reimbursement rate allocated per person, will vary. It is also possible to have 24-hour CILA supports in a residence that is owned or leased by the person(s) with a disability or her/his family.
Host Family CILA. Up to two people with disabilities live together with paid caregivers, either in a residence owned by the caregiver or in one owned or leased by the person(s) with a disability. The distinction here is not the ownership of the residence nor the amount of required support, but the fact that those receiving support and those giving it both reside on the premises. Shift staff may provide additional support, but live-in help must cover more than 50% of what is needed.
Intermittent CILA. Paid shift staff provide less than 24-hour support to one or more persons with disabilities who live in a residence, owned or leased by either the person(s) with a disability or their families. On-call staff are available 24-hours for unusual situations.
Family CILA. This is basically intermittent CILA but limited to situations, where the person with a disability lives with her/his family.
The amount of funding that a CILA rate package provides can range from less than $20,000/year for people, who need only intermittent support at a very modest level, to more than $100,000/year for people who have complex, 24-hour support needs. The person with a disability and her/his family must first determine what support level and/or living situation is required for that person to live a qualify life. If Social Security, the person’s work earnings, and family contributions are not enough to pay for what is needed, the person must make a case to IL DHS to qualify for the necessary waiver funding. The home-based waiver (not considered CILA) can also pay for supports in the person’s own home or a family home. That waiver covers a consistent $2,349/month or $28,188/year.