Frontline Initiative Choice, Direction, and Control

Enhanced individual choice, direction, and control over services were built into updates to Medicaid Home and Community Based Services (HCBS) program rules in 2014. These changes will influence how, where, and when DSPs work. Medicaid HCBS pays for the majority of publically funded services delivered to people with disabilities and older adults to help them live in the community. These updates were so large that states have been given years to come into compliance with them. Increasing a person’s choice, direction, and control were central to the values driving these updates, primarily through using person-centered planning and the new expectations for what settings constituted community living. These new rules will impact the work of DSPs, and the lives of the people with intellectual and developmental disabilities (IDD) if properly implemented.

Consider the following scenario

Juan dislikes getting up at 5:00 a.m. but there is only one bathroom in the house. All three of the men who live there need to clean up before 7:30 a.m. At breakfast, staff offer him a choice of two kinds of cereal for breakfast. Juan picks one. He misses his mother’s eggs and tortillas. When he is done eating, staff open the locked cupboard. They give him his medications, the hand brace that he wears at work, and a dollar of his money that they keep in the locked cabinet.

Juan watches TV. The staff help the two other men in the house. Juan thinks Joseph is okay but he really doesn’t like Franklin. When Franklin yells at him, the staff tell Juan that he should go somewhere else. The three men attend a day program together. They put head phones into packaging. Juan is slow to come back from breaks because the work is boring. However, it’s the only work that pays any money that he can do at the center.

After work, Juan is excited to see Jordan’s car in the driveway. Jordan can play basketball as well as he can. When he asked, Jordan says he can only play for 10 minutes. Jordan has to help Franklin run errands. After dinner, Juan waits for Toulo, another DSP. Toulo gets the cleaning spray and broom out of the locked closet. Juan helps Toulo clean up. Juan must be in bed by 9:00 p.m. This is the time that staff go off duty. He has to be in his room after that time. At his mother’s, Juan went to bed when he wanted. Juan can’t afford a TV so he listens to the radio until he falls asleep.

Throughout his day Juan’s choices and experiences are limited in ways that many of us don’t experience. The changes in HCBS regulations expect service providers to support people to live as others without disabilities do. This means making decisions. It means having control over personal schedules. This includes what time to get up and go to bed. It includes when and what to eat. It means choices about who to live with and where. It means being able to fully use all areas of one’s living space. It means having full access to one’s possessions, money, and household items. It means being supported to seek interesting and lucrative work. These are all things that Juan and many others do not experience currently.

DSPs in this new era will find their work requires different skills from them. The emphasis is on supporting a person to make their own choices. It allows the person to be much more in control of their life. It is likely to be more seamlessly connected to natural supports. This means DSPs may not see supervisors or coworkers much at all. Instead their workday will be with the person supported and people he or she knows. DSPs may not have typical or routine schedules even if they work in employment supports. They will be creative about helping people make informed choices. They may place less emphasis on monitoring or limiting choices to keep people safe. They may be called upon to help identify what is working for people and what is not. This may be especially important in situations where the person communicates non-traditionally or without words. These changes continue the progression away from segregation and lack of choice common to institutional living. They are movement toward the full promise of inclusive, community living.

Ask your employer about their view of these changes and consider checking out your state’s transition plan.