Feature Issue on Self Direction
Upending Assumptions
Self-directed services are often thought to be for people with only mild support needs. In reality, they are perfect for people with intellectual, developmental, or other disabilities, or mental illness. Self-direction gives people the freedom to choose how they live and what they do, which is especially helpful for people who need a lot of support. It also allows people to make real choices that lead to having control over their lives. Having consistent support staff who can focus on each person’s interests and needs can be helpful. For example, Jake, who has autism and other disabilities, found a job at a record store with staff who shared his love of music. This made him feel valued and provided new opportunities based on his strengths. Self-direction works best within strong circles of support. These parents, siblings, and longtime friends keep self-direction working well. As parent caregivers age, we need to improve staff training, simplify paperwork, and provide more funding so that people with significant support needs can continue to live fulfilling lives.
Self-directed services (SDS) with budget authority are commonly thought of as a “light touch” service, only appropriate for those with minimal support needs. On the contrary, the choice and control afforded by SDS make it the best waiver service option for people with intellectual and/or developmental disabilities (IDD) and complex needs; this group includes those with significant mental illness, communication challenges, medical needs, and people who are at risk to harm themselves or others.
Consider Ruth, Susan’s adult daughter who has a rare genetic disorder, significant intellectual disability, and bipolar disorder. Her moods are uneven, and she struggles daily with anxiety and obsessive thoughts. Despite her challenges, she usually wakes up eager to start her day. Most important to her are being with people she likes and keeping busy with activities she enjoys. With the assistance of staff, she makes meals, cleans, takes out the garbage, and does laundry. A typical week includes running with her team, Special Olympics basketball, a fitness class at the local Y/JCC, meeting a friend for lunch and bowling, and working two hours on Saturdays at a drug store. To be able to function, she needs to be supported by people who are upbeat and energetic, able to read her mood and figure out the supports she needs. She also needs the freedom and flexibility to be able to skip an activity, postpone a chore, or take time for a nap when necessary. These freedoms are uniquely available with SDS.
Generally, people with complex needs are steered into traditional services and settings: day habilitation, group homes or intermediate care facilities. Families are fed the myth that special places will keep their loved one safe. History has shown us that is not true.
Choice and control are foundational
People control their lives by having the freedom to make choices. But to make a genuine choice, you must understand your options, and it is recognized that the lives of most people with significant IDD are characterized by a poverty of experience. How do you know you’d love strawberry ice cream if you’ve tasted only chocolate and vanilla?
Simon Duffy has explored the structure of choice applied to personal budgets, another term for SDS. The most primitive kind of choice is yes/no. The slightly more advanced form is to choose between A and B; the choices are created by others, but you get to make the decision.
“The third kind of choice is control,” Duffy wrote in a recent blog on Citizen Network. “I control something when I shape it, when I make it – I say ‘I’m going to try this….’ This is an active process where I am changing the world, and changing myself through the process…. I am building a life for myself.”
Choice requires communication. Jake, Maggie’s son, was born three months premature. He is autistic and has cerebral palsy/dystonia, significant intellectual disability, and mental illness with psychosis. When he is comfortable, he can speak in paragraphs, sharing information about Japanese history and culture, anime characters, and rock music of the '60s and '70s, but under pressure, Jake is silent. Sometimes, he’s able to type out his comments on a notepad app on his phone, but when his anxiety is very high, he’s unable to even type to communicate his needs, and choice is impossible.
For some people with complex needs, making choices requires lots of practice and can only happen within a supportive relationship. Some people feel pressured by having to make a choice and may say the first thing that pops into their mind because they want to please the questioner or just want to get back to their screen.
Jake’s love of rock music requires thoughtful planning when he goes out to concerts or clubs to hear music. He needs a seat he feels balanced on and an unobstructed view of the band. The first three songs are magic, but the fourth song feels loud and uncomfortable, and he has to get out of there. Because of the flexibility of SDS, he and his support staff can leave early, go out for ice cream, and savor the win. Maybe next time, he’ll stay until intermission. If he had been attending as part of a group using traditional services and required to wait until the event was over, his reaction would have ruled out further shows.
Giving people opportunities to have new experiences, and letting people set the pace of their learning, leaves open the possibility for growth.
In other cases, people mistakenly assume that a choice is being made.
“He’s choosing to sit in front of the TV all day,” a staff member in a group home might say. Yes, but that is much less likely to happen with consistent staff who have the ability to understand and address the internal barriers that keep him from doing the things he would enjoy. People with complex needs are almost universally challenged by communication, so the importance of being able to select, or fire, staff cannot be overstated. Self-hired staff provide the best opportunity for reliable and effective interaction with the world.
Self-direction animates self-determination
Jake sees himself as a rebellious rocker. His sense of personal identity and difficulty adapting to change made him unsuccessful at 15 jobs he attempted. After finishing high school, he wanted to hang out with other music-loving guys like himself with dirty hair and black jeans. Maggie and Jake’s transition coordinator found Jake a job in a record store with other aspiring musicians, where he worked two hours, three times a week with support staff equally committed to rock music.
Jake needed ongoing support at home to get ready for work, hang up his coat, and check in with his manager; and his cart held only a few CDs at a time so he wouldn’t get overwhelmed. But Jake was valued because he could find any CD or DVD in the place.
Even better, the assistant manager was in a band that performed locally; the store employees were his fan base and Jake gleefully attended with staff.
Jake was accepted by his chosen community. The assistant manager changed stores three times, and always called Jake to join him at a new location. That tiny amount of work was, for Jake, his entire identity.
Self-directed services help people succeed, because they provide:
- The ability to use the same staff to transition from home to community to work.
- The knowledge that you can hire someone to teach you specific job skills, if necessary, and an understanding of how to navigate personal interactions and structure tasks for people with complex needs that is consistent across various settings.
- The flexibility to change activities as needed.
- The ability to be authentically person-centered by zeroing in on each person’s interests and needs
Just like everyone else, people with IDD need opportunities to learn their preferences. With SDS, you don’t have to apply to another program and spend weeks sitting on your couch to change your job or pursue a new interest.
Circles of support expand lives
The school years were filled with painful, negative experiences for Rick, Kathleen’s son. Diagnosed with Down syndrome and autism and being minimally verbal, Rick struggled to survive in a system where compliance was the highest value. Denied “choice” and a “voice,” these experiences left him with behavior as his primary defense and means of communication.
His bridge from school to adult services was an experiment with self-direction. We hired our own staff, explored community activities, and discovered what worked for Rick.
He liked being in his church, which was familiar and welcoming. He became a volunteer weekday cleanup person, supported by staff. The hours were flexible, and the work was useful to the parish and meaningful within his community. Rick’s church community expanded and he became a favorite of the office ladies who he visited for many years after he moved on. People who met him after he began using SDS 24 years ago cannot believe he ever exhibited challenging behaviors.
A key part of Rick’s journey has been the steady, ongoing support from his robust circle of support, which includes parents, siblings, and other extended family members. His aunt became his long-term, full-time support staff and has played a vital role in organizing activities and connections for Rick, including a weekly communication/social group. He has many long-term friendships, including with his girlfriend, who passed away a few years ago. Rick speaks of her often and still considers her a special person in his life.
His support circle has contributed many ideas, one of which led Rick and his group of friends to contribute their art regularly to annual fundraisers for the Rochester Contemporary Art Gallery. The first year Rick participated, his artwork was chosen as the cover of a program for the Rochester Symphony Orchestra.
We are hopeful that the engagement and ongoing support of this circle will continue when his parents are no longer able to provide support. We want self-direction to be a reality for the rest of Rick’s life.
Ensuring the sustainability of SDS
To keep people with high support needs in their homes and communities as they and their parents age, SDS need to be easier to use, and support options should be expanded. These improvements will also increase access to SDS for people who are under-resourced and don’t have families able to perform the myriad tasks SDS requires.
Expand the roles of existing support systems to
- Recruit, hire, and train staff
- Sign off on paperwork
- Pay bills
- Maintain and facilitate circles of support
- Arrange medication administration
- Assure staffing, which is critical for people who need 24/7 support. This can be done by using shared staff, paid neighbors, temporary employment services, or live-in caregiver.
Many people and organizations who are already involved with the person can take on expanded roles. Support brokers, who traditionally are charged with providing information and assistance and developing budgets, can fill in many of the gaps to take the person’s vision and make it a reality.
Change policy
- Support people to find and maintain non-certified housing, including housing navigation services and environmental modifications.
- Increase support for remote support/adaptive technology.
- Simplify and eliminate unnecessary processes and documentation that don’t affect service quality.
Some of these recommendations will require increased funding for individuals’ budgets. To accomplish that, we suggest that states establish parity with the funds spent on traditional services. Self-directed services are the best way to support people with complex needs and should be maintained as they age in place.