Feature Issue on Employment and IDD

Clear-language summary

Self-directed support services are a natural fit with competitive, integrated employment. Because they are flexible, they can be customized to each person’s goals and interests in every step of the employment process. It can take more time for employers to hire people who are self-directing their services because traditional service providers may be more familiar to employers. Hiring staff who are family members or friends can also be a challenge if they lack training and access to resources. Living in a rural area can also pose challenges for self-directing one’s employment services. The benefits include increased autonomy in the job, in the hiring of employment services staff, and in the use of resources.

Employment and self-directed services are a natural fit.

People who have been using self-directed services in other areas of their lives tend to choose self-direction for day services, including competitive employment support. They want to make decisions about hiring employment staff and develop a truly personalized job plan.

Self-directed services allow for flexibility and customization at all stages of employment including community exploration, networking, job-seeking, job-landing, and on-the job support. Employment services are inherently self-directed, and they mimic people’s real-life employment and career experience. But who is measuring employment outcomes and self-directed services, and what is really happening?

There are statewide and national measures of competitive employment outcomes that might include people who direct their services, but data is not formally or consistently collected from people who direct their services, and the data are not aggregated. We do not know if outcomes are better for people who are self-directing.

Some providers may offer more control to people over their services. Do these people have better employment outcomes because of that? How do we capture this connection between self-directed services and employment?

One state’s recent experience with self-directed services is instructive. Utah’s population is spread across urban and rural communities over a large geographical area. In fiscal 2023, Utah’s Division of Services for People with Disabilities (DSPD) served more than 6,000 people with disabilities on Home and Community Based Services waivers under both a provider-based and a self-directed model called “Self-Administered Services” (SAS), according to its annual report. Utah’s service system has placed a priority on self-directed services, including a caregiver compensation option, to meet the growing needs for people in services and on waitlists.

Utah reported more than 2,000 people chose SAS in-home services such as personal assistance and homemaker services. While a percentage of those utilizing SAS hold competitive and integrated jobs, neither the Utah Department of Workforce Services, (Vocational Rehabilitation Department) nor the DSPD supports a self-directed job coaching option. Exceptions can be made for employment with administrative approval.

Despite these numbers, the U.S. Justice Department in June issued findings from a multi-year investigation that it said showed Utah is in violation of the Americans with Disabilities Act because youth and adults in the state are being unnecessarily segregated in sheltered workshops and day facilities. The state should connect people with IDD to integrated employment options, cut wait times for services, and expand transition services for youth as they leave school and enter the workforce, Justice officials said. In their letter to the state, officials focused on provider-based solutions, but self-directed services present an alternative path to reaching competitive and integrated employment outcomes.

Utah’s response will follow in the coming months, and likely will resemble person-centered and self-determined solutions other states have taken in response to complaints. Surely, self-directed employment support represents another option, tool, and resource to reach that outcome for families in Utah and other states facing similar barriers.

Previous lawsuits have led to solutions to protect and secure the civil rights of people with disabilities to receive services in the most integrated settings possible.

Choice, individual control, respect, self-determination and, yes, the option for a self-directed service model, are foundations to ensure equality and full access to work, community, and a full life. The next step for self-directed employment services is to move from promising practice to evidence-based practice through data, observation, and analysis.

There are challenges, however:

• It can take time for people self-directing their services to hire employees. By comparison, it may be easier to find staff via traditional service providers. One solution is to use an agency while also seeking ideal employment staff matches.
• People who self-direct their employment services have autonomy over hiring their employees and they may hire people they know. Employees who are familiar to them, however, may not be aware of or trained in labor law, how to develop a job, or accommodations on the job. Close relationships with family and friends at home, in the community, and on the job could also create misunderstandings for a business and the new hire in meeting expectations, accommodations, and other areas. All people hired by the person, including friends and family, should have the same access to training and resources to support a person’s employment outcomes.
• In some states, job development may only be accessed through an approved provider. Allowing independent providers and employees to obtain job development training opens up more possibilities.
• Some states don’t allow self-directed employment services, or they are not provided for in a budget allocation. States may need technical assistance to prioritize this employment-first best practice.
• Rural living or having a limited natural support circle is another barrier. Self-direction offers flexibility and resources within reach, not only available by accessing them through another person.

The elements of self-directed services that support good employment processes and outcomes include:

• Autonomy over the position. A significant outcome of the COVID-19 pandemic was that people who used self-directed services had the choice to continue working at their jobs. For those who relied on providers for employment services, however, the provider often had control over their job situation. This could be because the provider had a contract or strong connection with the employer, or because they directly managed the job coaches and employment support. Providers could decide to stop sending job coaches or end contracts with employers, which affected job retention, attendance, and overall employment.
• Autonomy in hiring employment staff.
  • People can hire and train their employees in alignment with what is important to them.
  • A person’s employment personnel should blend into the work environment organically, like any other trainer or manager on site.
• Autonomy and ownership over proper service resources
  • People organize the support they need. People with disabilities will access medical and other services at the same time they are accessing job support services. They can schedule these services with multiple providers, including family members.
  • State waivers can be used flexibly, including to provide orientation and training for support workers.
  • In some states, the flexibility of transportation funding may be the solution to obtaining employment. Funds can be used for any type of transportation, and caps may not exist for transportation services, which is critical for people living in rural areas or who lack other transportation resources.
  • Virtual support, or a combination of virtual and in-person support on the job, has been a game changer for people and employers. Likewise, advances in universal design that support self-direction will also benefit people without disabilities, making them appealing to all.
  • A support broker, often a creative member of the person’s planning team, may help. They may aid the person in the recruitment of employment staff and support decision making about service choices and budget allocations so that job and career options are included in the plan.
  • Having the ability to purchase goods that provide adaptive support and accommodations on the job is essential.

Self-directed services are inherently part of an Employment First philosophy. If a person wants to work, they gather the support to do it. Entrepreneurship is well supported in this model, allowing people to get started before the formal business-plan stage.

Self-directed services represent an underused practice to help people land and keep competitive work in rural, suburban and urban communities. It can be an answer for people living in poverty, hard to reach areas, or areas where people have difficulty reaching resources. When a person holds the same passion for the work as their coworkers, when their transitions are easier because their own support staff knows them best, and when they realize greater autonomy because of these inclusive strategies, the best outcomes of self-direction will be realized.