September 12-18, 2021 is Direct Support Professionals’ (DSPs’) week. If you are a person with a disability, who needs support or are the family member or friend of someone who needs direct personal support, especially due to an intellectual or developmental disability, then the approach and commitment of the workers, who provide that support, can contribute significantly to quality of life. Often it is only the negative stories that make it into the news, but in the seven years that I spent running an agency that provides daily living supports to people with intellectual and developmental disabilities, I interacted with amazing direct-support professionals who:
Recognize the importance of relationships, including romantic ones. Paul, a man who received support at a particular agency, had a long-time female friend who attended the same day program. A support work from her agency took them out for dates every Wednesday at restaurants and movies. Paul referred to his friend as “my wife, Linda.” Paul loved attending weddings of family and friends and even watching weddings on TV shows. Because both he and his friend were under guardianship and required significant support with regard to intellectual and executive functioning, they could not legally marry. However, support workers at his agency worked together to find a friendly pastor, well-known to Paul, who would lead a friendship commitment ceremony. They took Paul and Linda to buy rings and Linda to buy a dress. Linda’s mother rented a limo, and the support workers arranged a venue for the ceremony and food for the reception. Paul’s long-time housemate from his group home was his best man. Everyone dressed up and had a fantastic time, cheering Paul and Linda as they made their vows and Paul “kissed the bride” very dramatically.
Recognize the importance of meaningful work. Jane, a woman with an intellectual disability whom I know, was having a very rough time at her day program. Workers at the day program complained daily of Jane’s “behaviors” and her “acting out”. Workers who supported Jane at her group home sat down to talk with her. She explained that she was bored out of her mind, other “participants” went out of their way to irritate her, and when they did, the staff was unresponsive. She had tried “using her words” but the staff literally did not hear her. The support workers at her group home worked with Jane to identify what she did want to do, which was join a fine and performing arts collective, where people with and without disabilities created art together. The support workers then called the case management agency and forced an emergency “individual support plan” meeting. While the staff at her current day program tried very hard to convince Jane to stay because “surely you don’t want to sit around and draw all day,” the case manager and the staff at her group home fully supported Jane’s desire to change her work and made it happen for her.
Recognize that adults can and should do adult things. In one agency with which I am familiar, one man, who worked hard at his competitive job until older-age and health concerns slowed him down at 75, liked to relax with a beer. He also liked to chew tobacco. His support workers did talk to him about the potential health risks of tobacco. They also facilitated conversations between him and his housemates who wanted to make sure that the “spit cups” he used were disposed of regularly. What the support workers did NOT do was stop this hard-working gentleman from purchasing or drinking beer or purchasing and using “chew,” and making his own decisions about where and when to engage in these legal, adult pursuits.
Recognizing the importance of civic engagement. Support workers at an agency with which I am familiar take time around each election, at least each major federal election cycle, to help the people they support gain access to accessible information about each major candidate. They then go out of their way to make sure that everyone in the house got to the polls.
Recognizing the importance of nurturing developing self-advocacy. Every year, the Illinois Council on Developmental Disabilities and the ARC of Illinois so host the Speak Up and Speak Out conference, at which individuals with intellectual and developmental disabilities develop their self-advocacy skills, mentor others in self-advocacy skills, and showcase their talents and achievements; for example, those that have micro-businesses have vendor booths. The support workers that care are willing to drive the people they support nearly three hours from the Chicago area to Springfield, IL, where the conference—at least in pre-COVID times—takes place.
Recognize the importance of a spiritual life. A faith-based provider of group-home services supported people, who (if they professed any faith), identified themselves as Christian. They went out of their way to make sure that the people they supported, who wanted to get to church, got there every week. A Jewish man wanted to move into a home with the agency because his long-time best friend lived there. The agency director spent nine months talking to the man and his mother about how he could maintain his Jewish faith practice after he moved in. Once he moved in, his support workers not only helped him get across the city to attend his home congregation, but also welcomed his mother into the home on some Friday evenings as well as certain major Jewish holidays so that mother and son could lead meal-centered liturgical celebrations with the man and his housemates who wanted to attend.
Recognize people’s capabilities. Except where questions of safety dictated otherwise, support workers at an agency that ran group homes assisted those they supported to learn the neighborhood walking routes and points of interest, worked with those who wanted to learn public transportation, and provided people with keys so that they could come and go home as adults.
Recognize that they work for the person with a disability and not her/his parents, siblings, or guardians. While it is, of course, necessary to follow a guardian’s decisions in matters of health and finance, some parent-guardians or sibling-guardians try to control every aspect of their loved ones’ lives such as what, when and how much they eat, what they wear or how they style their hair, whether and how frequently they go “home” to visit the family, or what kind of friendship or romantic relationships they should have and with whom. Sometimes these family members, though perhaps well-intentioned, put the support workers in a very uncomfortable position by equating “good care” with following the express wishes of the guardian, even when those are in contradiction with the desires of the person being supported. Good support workers stick up for the person they support and recognize that person’s right to self-direct her/his life to the fullest extent possible, except when it is a danger to her/his physical, mental, emotional, or financial well-being, or that of others.
Recognize the importance of pets. Like any other segment of the population, some people with disabilities are “animal people”. The decision about whether or not a group home should have a pet should be up to the residents, not the staff. At the same time, the support workers should make the effort to teach the residents with disabilities how to care for the pet, if the latter do not already know how themselves.
Recognize that people like and dislike different activities. No one who lives in a group home because they need support should be “required” to participate in all the same activities as her/his housemates. To the extent that staffing levels permit, good support workers help each individual who lives in the group home, to support her/his interests and hobbies as well as maintain relationships and engage in activities with friends they have outside the group home and even outside the agency.
DSPs often work long hours and for low wages and few benefits. People with disabilities and their families and allies as well as the DSPs are working to change that. DSPs should be acknowledged, respected and encouraged all 52 weeks of the year because the support they provide, when done well, can be the key to the success and independence of a person with a disability.