Three social media posts caught my eye, this past week. The first was an article about opposition to the decision of a café that employs and serves people with developmental disabilities to start serving alcohol between 11 am and its closing time. The café is currently holding firm. The second was a brief video in which a man with intellectual disability expressed his anger at being talked to as if he was a child. The third was a photo of a woman with a developmental disability holding a cute cat. The caption of the third photo read: “People with disabilities have sex. Sorry if this meme was not cute enough for you.” All three posts make a similar point. Adults with disabilities, including intellectual and developmental disabilities, are adults FIRST. As adults, it is their right to drink alcohol, smoke cigarettes, ingest or smoke marijuana (where legal), and gamble (also where legal), and have intimate personal relationships if they so choose. Especially relevant, this fall, is that they can vote too. As adults with disabilities, they need both a living situation that recognizes their rights and the support within that living situation to navigate the challenges of these and other aspects of “adulting”.
For example, the person may need help understanding that they should not drink alcohol when they are taking certain medications. They may need education on how the alcohol content can vary greatly across different beverages—a light beer is not the same as vodka, for instance. It may be important to have a conversation with them about the dangers of smoking or chewing tobacco or any product. They need to know the age limits for both alcohol and tobacco products and be prepared to present an appropriate ID at purchase. They need someone to talk them through the odds of gambling and determine how much money they can comfortably afford to risk. They should have one or more confidants with whom to discuss their relationships and get appropriate advice about emotional and physical boundaries, consent, safety and birth control. They may need to have someone break down the political positions and proposals of candidates, who are running for any office, into accessible language. But assuming that there is no risk to their health or safety, people with disabilities should NOT be restricted from doing legal, adult activities just because a family member, support worker or anyone else thinks such activities are “not appropriate”.
Navigating just how to support an adult with intellectual and developmental disabilities can be difficult, even when the person is still living with immediate family members. Parents or siblings may struggle to see the person as a full adult and/or may disagree among themselves about what is the best way to provide support. Structuring this support can get even more complicated, once the person with a disability moves out of the family home and into a different kind of supported living situation. Support workers may have different backgrounds, approaches, and training and thus have different viewpoints, compared to parents and siblings. When ideas clash, support workers, who do it right are expected to listen first to the desires and opinions of the person with a disability whom they support.
I encourage my clients with disabilities as well as their parents and siblings to consider the complexities of the person’s current or future adult life, when creating a future plan. The first step in creating a workable financial plan to provide for the needs of a person with a disability is to make a realistic assessment of what those needs are that includes not only the obvious needs like food and shelter but also the person’s need for age-appropriate relationships, activities, and outlets. Part of the process is getting to know the culture and policies of the support agencies in your area so that you can find an agency to work with that will take seriously the desires of the person with a disability. It is also important to understand what public benefits will cover and the kind of supplemental funds that the person with a disability and the family need to accumulate. Medicaid wavier money will put food on the table, but it will not cover the person with a disability taking their significant other to a nice restaurant and having a good glass of wine with dinner. It will pay for a support worker to take the person with a disability to the polling station to vote, but it may not pay for that worker to sit for several hours explaining the various candidates’ positions.
One of my friends at L’Arche-Chicago, a person with a disability, has both enjoyed his work for years and worked extremely hard. He also enjoyed his beer and his chewing tobacco. He did not have any family to object to either of these habits, and the assistants at L’Arche worked with him to understand how much of each was reasonable. Similarly, the assistants at L’Arche encourage those they support to pursue relationships and to watch and discuss election candidates as well as meet elected officials to advocate for themselves. L’Arche is a very unique agency because the settings are small, and many of the supporting assistants live in the homes with those they support. Those with and without disabilities consider themselves to be in “mutually transforming relationships”. But in general, each agency has an approach or culture; and it is important to sound out how an agency, through which you intend to procure services, approaches supporting adults with disabilities to live as adults and not as perpetual children.