Last week, my husband and I had lunch with three of our friends, Anna, Franz and their adult daughter, Erika. Erika happens to have Down syndrome. Several times during out lunchtime conversation, Erika and her parents very consciously used the term “people with different abilities”, and not the often acceptable term “people with disabilities”. Erika explained with some passion why she dislikes the phrase “people with disabilities”. Despite complying with “people first” language, the term still identifies people as lacking something or having something that is not considered typical. Erika, in fact, has many, many abilities. She has worked in the same field for twenty years and is appreciated by her supervisors. She is a public speaker and a strong advocate for herself and others. She understands politics and the importance of not only voting but contacting legislators on behalf of issues that concern her. She has many friends and an active social life, even if much of it is currently channeled through Zoom. She reads and she is a fixture in her book club. She is an attentive aunt and a person of faith, who regrets that she can only attend her nephew’s confirmation via (yes, again) Zoom, but she plans to make it up to him by ensuring that the cake she brings to his family party imparts a blessing.
Erika does require some supports in her daily life, some of which are paid for by Medicaid waiver dollars. The supports that she wants and needs are unique to Erika and distinct from those that any of her friends might need. They are distinct from what any other person might need. Similarly, each of the adults, who live at L’Arche Chicago (both when I served there as executive director and now) has a unique set of skills and needs. Each contributes her or his skills to the overall community, and the community applies the government benefits of each member to provide the personalized support that is unique to that person. Each of the clients that I now work with likewise has a specific vision for her or his life and a particular aggregation of things s/he can do well as well as things s/he needs extra support to accomplish with regard to realizing that vision.
This is why there is no “one-size-fits-all” to planning for a family member with different abilities. You need to take into account the person’s strengths. Some friends of mine (who have differing abilities) are very aware of diet and exercise. They know exactly what makes a meal healthy and how to prepare it. One even grows his own vegetables—although he admits to not liking tomatoes. Some are very active, playing numerous sports and maintaining a gym membership. Some of my friends are passionate about their jobs and meticulous about their work schedules and equipment. Some of my friends are out and about with friends and significant others every weekend—or were before the virus and will be again afterwards. Some are band members, who have themselves entertained at clubs like Chicago’s Double Door. My friends do not need “awake overnight staff” at their home and may not need any overnight support at all, although they appreciate a few phone numbers for emergencies. They do not need a support worker to provide “day programming” for them or to shop or cook for or even with them. Given the variability of public transit, they might need, at most, a ride to and from somewhere. On the other hand, most of these friends do need some guidance with money management and with budgeting and navigating our increasingly complex health care system.
I have other friends who have master’s degrees and careers. Some have themselves gone into social work because they are determined to improve and make a difference within the systems that have not served their families well. Some are in ministry because their own experiences give them a particular capacity to listen and support. They manage their own budgets, retirement plans, and homes. Some of these friends rely on service animals and assistive technology to live their full lives. Some require a great deal of physical support from human workers. They need assistance with activities of daily living like eating, bathing, dressing, and transferring. They require an adapted van to transport their mobility aides as well as themselves, and most of them require someone to drive the van. They require physical and occupational therapists and sometimes access to special facilities to keep their bodies as flexible as possible.
All of these friends require some extra support, which may be beyond what family and friends can provide. As with the rest of us, their support needs will probably increase with age. Some of them work at a level, where they can pay for their support needs as well as their daily living expenses. Some of them are eligible for one or more kinds of public funding through Social Security, Medicare, or Medicaid. Some will require supplemental funds from their families to ensure their retirement plans succeed. Many will need an intimate familiarity with the rules and requirements of public benefits and will need to carefully and proactively manage their income and assets to maintain their access to those benefits and the critical services they fund.
The day after my lunch with Erika and her family, I revisited a documentary film I had been privileged to see many years ago.The film, entitled Body & Soul: Diana & Kathy (New Day Films, 2007) is available here, with a short trailer here.The film recounts the true story of Diana Braun, a woman who has Down syndrome, and Kathy Conour, a woman with significant physical limitations caused by cerebral palsy.Diana is the personal care assistant for Kathy, managing all aspects of physical care for both Kathy and their household as well as driving them both wherever they need to go—especially to the venues for their advocacy work.Kathy provides support to Diana as she manages the household finances and their benefits and relationships with service providers.Their abilities are complementary, and their relationship allowed them to live and extraordinarily independent and self-directed life. Talented and energetic people, such as Erika as well as Diana and Kathy from the film, very much show that there are people with different abilities, which are very valuable to themselves and to society.