Background
Johnathan is a 39-year-old living in western Massachusetts with his family. Johnathan has worked as a bagger at a local meat and produce store for the past 15 years. He loves his job, has formed positive relationships with community members, and feels supported by his coworkers, many of whom he considers friends. Johnathan likes to spend his free time with his friends, exercise regularly, and travel to different states across the country.
What’s Im
portant
Johnathan has always been outgoing and enjoyed working in retail positions. His early work experience included working as a bagger at a supermarket and stocking shelves in the toy section of a department store. Johnathan had job coaches who were funded through the Massachusetts Department of Developmental Services (DDS). His job coaches supported him to find and apply for jobs and supported him on the job for all his shifts. However, Johnathan would have a different job coach each day. “It was kind of a nightmare, because you didn't know who was going to be picking him up that day,” Johnathan’s mother, Shelley, said. “Even for your adult child that doesn't always have a clear voice, because maybe somebody doesn't understand him. It was very hard for my husband and I to say, ‘yeah, sure, go get in that person's car that we have no idea who that is’.”
Johnathan admitted feeling “a little bit” nervous about being supported by a rotation of job coaches. Johnathan and his family also found it difficult that Johnathan could not choose the hours he worked at his first two jobs. At the supermarket, Johnathan was assigned a schedule by his manager and felt he did not have much say or flexibility with his schedule. Then, while working at the department store, Johnathan lost his job coach and had to give up his position.
It was on a family outing to a bowling alley that Johnathan and his mother were talking about his search for a new job. Johnathan’s new job coach was struggling to find him a place to work. A woman who worked at a local grocery store overheard their conversation. She approached Johnathan and his mother, told them that the store was hiring, and encouraged him to apply. That was 15 years ago, and Johnathan has been happily employed at the store ever since.
Around that same time, Johnathan’s case worker told him and his family about the new option of service delivery through the Massachusetts Participant-Directed Program (PDP). Johnathan and his family were not happy with the working model of other agencies. They were concerned with the inconsistent job coaching. It was difficult not knowing who would show up to support Johnathan day-to-day. His case manager thought the PDP option might offer better support and more flexibility for Johnathan. His mom shared, “With her [Johnathan’s case manager’s] help, we decided to give it a try. It was a perfect fit.”
Through PDP, Johnathan was able to hire staff that he knew, such as family members and close friends. His aunt was hired as his job coach and helped him with his application and interview at the supermarket. She also trained alongside Johnathan so that she could support him during each of his shifts. Johnathan found he had more say in scheduling and worked with his new employer to set a schedule that fit their needs and his life.
What Happened
Johnathan now works as a bagger for a 3-hour shift three days a week, making a competitive wage of $16 per hour plus tips. Johnathan carries customers’ groceries out to their cars, and he earns “good tips.” His mother added: “especially during the summer, his wallet will be overloaded.” Johnathan enjoys interacting with customers and has formed meaningful relationships with his coworkers; he spoke specifically about his best friend at work. The supermarket also proudly celebrates World Down Syndrome Day each year and features Johnathan in an article in their grocery newsletter that month. Johnathan also receives 25 hours of day support throughout the week and additional support twice a week to do things he enjoys in the community. He had employer authority for these services as well.
Johnathan’s mother supports him to submit his staff’s timesheets to DDS and manage his budget. Over the 15 years that Johnathan has received self-directed services, the DDS has simplified these administrative tasks through an online record-keeping system. If Johnathan’s family encounters any issues managing his services, Johnathan’s mother says: “there's just always support… [at DDS] everybody's there to answer your questions and to get you through.”
Johnathan and his mother attribute his success to the incredibly supportive workplace environment and the control Johnathan has over his employment services through the PDP. Johnathan says that it makes him happy to be working with the same people consistently. Aside from his aunt, who still supports him, Johnathan and his family hired another trusted family friend to be a backup person when needed. This reliable support provides Johnathan with the flexibility to pick up extra shifts at work when he wants some extra money. Both individuals coach him at work to help keep him on task and support him on his days off to do things he enjoys in the community.
Johnathan’s family members have noticed that his quality of life seems improved because of his consistent work schedule and the support he receives from familiar people. Johnathan’s mother shares:
His quality of life is so much better now because he's more at ease. He knows what's going to happen for the most part during the day, or at least, he knows the person that he's going to be with for that part of his day. He knows how he's getting home. He knows their name. It's a good feeling. I think, for a family who wants the flexibility and wants to know who's actually going to be working with their child, this [PDP] is the perfect program for them.
When asked what he would tell others about self-directed services, Johnathan says he would also recommend it and adds: “I love my job. I love my friends. I love my life.”
Lessons Learned
Educate yourself on the available service options. Ask questions and see if better supports and services are available. Johnathan worked for many years without much control over his employment services. He and his parents were not happy with the employment supports he received. Self-directed services gave them control over hiring and scheduling that brought more ease to Johnathan’s life.
Having reliable employment supports sets a foundation for success. Johnathan’s ever-changing job coaches and schedule made him nervous and even led to him leaving one of his jobs. Through self-directing his employment services, Johnathan could hire people he knew and trusted to set him up for success at his workplace. Self-direction offers individuals more authority to decide who their staff will be, which services they will provide, and when the services will be provided.