Background
Joe is a 29-year-old from Central Massachusetts. He lives in his own home and has a close relationship with his parents and siblings. He works as a busser at a restaurant where he is well liked and known as a hard worker. Outside of work, he has a very active life and enjoys working out, Special Olympics skiing and bowling, running 5ks, playing Jumbo hockey, socializing with friends and family, and going to movies. Joe also has a garden where he takes care of vegetables he grows and donates to community organizations. Joe thrives when he’s busy and engaged with his surroundings.
What’s Important
Joe’s parents wanted him to live independently like siblings and peers: living in his own condo, having a job, staying in great physical shape, and contributing to and benefiting from his community. They knew that Joe would need services and supports to attain these possibilities. They wanted to be sure Joe could have control over who provided him services and how the services were provided to achieve the best outcomes for him.
When Joe was about 18 months away from turning 22 years old and transitioning from high school to employment, his family began exploring how they could find employment support through the two self-directed service options available through Massachusetts DDS: Agency with Choice (AWC) and Participant Directed Program (PDP). These self-directed service options enable individuals and families to design supports tailored to their goals and needs. Joe and his family explored both options by visiting adult service agencies to ask questions and observe interactions.
The Agency with Choice model allows individuals to partner with an agency to share responsibility in selecting and managing support staff and running their daily activities. Participants have a budget to purchase services that meet their needs and can choose who to hire, while the agency helps with hiring, payroll, and administrative tasks.
The Participant Directed Program (PDP) provides individuals and families the flexibility and freedom to customize their activities and focus on their interests and needs. Participants can choose and hire their own staff, manage a DDS budget, and use a financial management service for payroll and invoices. Participants may get support from family or friends or support brokers.
Joe and his family chose the PDP service option because they could make better choices about how Joe would spend his time. They could also make sure that people interacted with Joe in ways that encouraged him to live up to his potential. Joe learned new skills especially well when people taught him using the applied behavioral analysis (ABA) method. With the PDP service option, his family could seek out service providers who were experienced with the ABA method.
At the same time, Joe and his family explored job possibilities where he would be a good fit, mostly at local restaurants. Joe and his father enjoyed a particular local restaurant and knew the manager. After hearing good things about the restaurant from a classmate who worked there, they went there for lunch and spoke with the manager. Joe and his family liked the idea of a daily job routine at a place he enjoyed. They hoped Joe would have familiar tasks and would work around people in the front of the house at the restaurant. The manager thought Joe would be a good fit and decided to hire him.
Joe and his family used self-directed services to arrange for the type and amount of support he would need for each part of his day. They obtained DDS funds to pay for job coach support for Joe during his afternoon hours at the restaurant and funds through their private insurance for daily home- and community-based supports before and after work.
Joe and his family initially faced challenges implementing self-directed services, mainly with finding consistent support. To address this, Joe and his family found support providers in their networks including local college students studying human services courses who they called on to help on short notice. Joe’s parents also provided support for all or part of any day when someone else could not be available. As Joe’s dad shared:
"We had a good service provider to start. She and I used to joke that we were learning PDP together, because so much of it is figuring things out as you go—especially when you're trying to follow a person-centered approach. It’s not always going to go perfectly. Sometimes things work, sometimes they don’t. You try something and it fails, or someone you thought would be great only lasts a few weeks. So, yeah, we’ve been through all of that. There are some downsides too."
Currently, Joe has an ABA service provider who hires and trains any new people supporting Joe. The family has a fiscal intermediary who makes sure that support providers are paid.
Joe and his family also highlighted some benefits of using PDP. It allows Joe and his family to tailor his support to meet his individual needs. To start with, the family noted that PDP promotes person-centered planning. His dad shared, “ Joe's program is specifically designed for Joe. … I think what's working is Joe has the most person-centered program that you could wish for.” In addition, using PDP gives Joe and his family the flexibility to hire staff who know Joe well and can support him effectively. Joe’s job coach has worked with him since childhood, originally working as a respite provider, and now brings a deep understanding of Joe’s needs and strengths. This helps Joe and his family to build a strong and consistent support system and relationships that support him to grow.
What Happened
Joe has maintained his busser job at the restaurant for eight years now. Joe has a job coach for support with tasks and workplace interactions. Since Joe has become very good at his tasks by now, his job coach is mainly there to redirect him if he has to break his routine to clean an unattended table or handle some other unexpected tasks.
In addition to paying for a job coach, the DDS funds have provided Joe with a smartphone and iPad he uses to keep track of his schedule and the completion status of his tasks. Joe interacts with coworkers and knows to check in with that day’s manager. Joe is also part of any workplace social events he wants to attend, such as birthday parties or other staff celebrations.
Joe has a structured day from 8:30 AM to 5:00 PM, which works well for him. From 8:30 to 11:30 in the morning, Joe’s support person assists him with independent living skills, doing errands in the community, or working out at a gym. Then, Joe goes to work and gets job coaching support through his work shift from 11:30 AM to 2:30 PM with self-directed services funded by DDS. After work, Joe’s support broker works with him on independent living skills and employment skills, working out or participating in his many sports activities. Joe spends evenings having dinner with his parents, relaxing at his condo, or socializing with family or friends.
Individuals can use self-directed services to achieve and maintain success, but challenges often come up and require flexibility. Luckily, this approach lets individuals adjust to new needs in ways that work best for them. As Joe’s dad noted, "Joe is definitely a success story, but success is often temporary, and new challenges need to be addressed. I think PDP gives us the flexibility to manage the challenges.
Lessons Learned
- Start early. Designing a self-directed service program takes time. Joe and his family noted that it took them 18 months to figure out what kind of program they wanted for Joe and another 18 months to put the program solidly in place.
- Self-directed services promote person-centered planning. Self-directed services allowed Joe and his family to design a program specifically for him, with the amount and type of support that worked well for him.
- Develop good budgeting skills. Whether you need self-directed services all day or for part of the day, list the services in a budget. List the type of support you need, why you’ll need it, who should provide it, where you’ll need it, and the timeframe. Each provided service needs its own line item. For Joe, the list includes developing the behavior plan, training people to work with Joe, people supporting Joe at work, and the assistive technology Joe uses on the job.
- Be prepared for the time and effort needed to manage self-directed services. Managing a self-direction budget requires careful tracking of services within strict line-item allocations. Working through a change in fiscal intermediaries can take time and may involve processes that can take months to complete.
- Maintain good relationships. Self-directed services allowed Joe and his family to choose support providers who had spent time around him before and whose expectations for Joe matched theirs. Joe’s family and supporters all understand that everything has been arranged for him to live a life that focuses on the ways he can engage with the world.
For more Information, contact:
Jean Winsor, PhD
Institute for Community Inclusion
UMass Boston
Boston, Massachusetts 02125
Phone: (617) 287-4300
Email: jean.winsor@umb.edu