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Housing Options
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Self-Direction Services
Self-Direction services (SD) allow individuals with disabilities (or their families/guardians) to take control of their own care by managing and directing staff and the support services they receive.
When students with visual impairments and other disabilities graduate from high school, they often become eligible for adult services through state agencies that support people with developmental disabilities. These services provide programs and resources aimed at helping young adults engage more fully in their communities and enhance their independence as they transition to adulthood.
Eligibility for services is determined by assessments and tools utilized by each state agency office. For example, in Massachusetts, young adults may qualify for services through the Department of Developmental Services (DDS).
There are different service models to choose from. Some individuals prefer or require services using a Traditional Model, which are often site-based centers with staff offering instruction and clinical services. Sometimes referred to as “day programs”, traditional models typically include group activities around pre vocational and social skill building and community outings and, most importantly, health-related support.
The Self-Direction (SD) model, available through agencies like DDS, is an alternative to traditionally delivered and managed services. Participants receive a budget to pay for the staff and activities they need to engage in the community and help them to maintain their independence at home. Families are also given funds that they can spend for services for the individual. In the Self-Direction model, families or guardians have the responsibility for managing all aspects of service delivery in a person-centered process. Depending on where you live, your state’s Self-Direction services might be called Self-Directed services, Home-Based services, Self-Determination Program or something else. In Massachusetts it is called the Participant-Directed Program (PDP).
Good to know
In some states (Massachusetts, Oregon, Pennsylvania, New Jersey, Maryland, and New York), an individual with disabilities and their family can partner with an agency to manage and handle aspects of self-direction, such as hiring, timesheets/payroll, etc. In Massachusetts, this is called Agency with Choice (AWC). Other states’ models may have different names. Learn more about Agency with Choice in Massachusetts.
About Self-Direction
Self-Direction (SD) allows individuals with disabilities (or their guardians) to take control of their care by managing and directing the support services they receive through a budget provided by the Department of Developmental Services (DDS). This approach offers greater flexibility and autonomy in how state or federal funds, such as Medicaid, are often used, allowing for more personalized and tailored support.
Self-Direction allows the participant and family the opportunity to create individualized support based on their vision and the individual needs.
The many benefits of Self-Direction, include:
- Greater freedom and independence in decision-making.
- Personalized towards the individual’s desires and dreams.
- A greater sense of ownership over life choices and services.
- Potential for better quality of life through individualized support.
Who is Eligible for Self-Direction?
Your transition team can guide this process for determination of eligibility. The process usually begins from age 18-20, ideally. If found eligible, adult services may include programs and resources aimed at helping young adults engage more fully in their communities and enhance their independence as they transition to adulthood.
Participation in self-directed funding programs generally requires an assessment by a state or local agency, often under Medicaid or similar programs. Eligibility criteria vary but often involve meeting specific needs based on disability and level of need. Ask the DDS agency in your state if your young adult is eligible.
Each area office has a set standard of assessment tools. Your area office and transition team will review the assessments in your eligibility meeting. The assessments typically explore activities of daily living, safety in the home and community and behavioral and emotional needs.
Massachusetts Families
In order to choose Self-Direction, you need to participate in the Adult Supports Waiver program from the Massachusetts Department of Developmental Services (DDS). The Adult Support Waiver is one of three Home and Community-Based Services (HCBS) waiver programs that DDS offers for adults with intellectual disabilities.
To be eligible for the Adult Supports Waiver, individuals must:
- Be at least 22 years old
- Be enrolled in MassHealth Standard
- Have an intellectual disability as determined by DDS
- Be assessed by DDS to need one or more waiver services, and meet the “level of care” established for the waiver
When choosing Self-Direction, an individual with disabilities and their family will be assigned a support broker/consultant/counselor who will help identify personnel and resources to meet the individual’s needs.
What kinds of services and activities can be self-directed?
A lot! Families and young adults can choose who will provide support and have a say in how they spend their days. For example, family members, friends, or community members may be hired as staff. And individuals may choose to volunteer, work out at the gym, take a class, or pursue competitive employment, all while having control over their daily schedules.
Self-Direction allows families to make choices for their young adult, such as:
- How the young adult will fill their days and helping young adults develop a schedule of activities based on what is meaningful to them.
- Leisure activities and ways to stay healthy
- Building relationships and maintaining connections with friends and family
- Who to hire for personal support (these staff are often called “Skills trainers”).
Social and recreational activities that are covered by Self-Direction can include these supports:
- Adult Education classes
- Volunteer work
- Memberships to local gyms
- Memberships to museums
- Activities such as Community Rowing and having a buddy to row with
Breaking it all down
Self-Direction supports an individual with disabilities independence and decision-making in the following areas:
1. Individualized Budget
Each person typically receives a personalized budget based on an assessment of their needs. This budget is used to pay for the services and supports that help them achieve their life goals, whether those goals involve living independently, working, or participating in community activities. While families and individuals have control over their services and budget, they often receive administrative support from a fiscal intermediary (see below).
What is a Fiscal Intermediary?
Managing a Self-Direction budget can be a lot for some people. Fiscal intermediaries help with tasks associated with managing the money you receive, such as payroll, handling taxes, and ensuring compliance with legal and regulatory requirements.
Transition tip
Your Department of Developmental Disability or state medicaid office will provide a list of Fiscal Intermediaries so you can find one that fits your needs. You should consider the cost and experience of each when deciding on the right person. Their fees are typically taken out of your allocated budget.
2. Personal Choice and Control
With Self-Direction, individuals (or their designated representatives) have the power to:
- Choose the services and supports they need based on their preferences and personal goals.
- Hire, supervise, and if necessary, dismiss their own caregivers or service providers, such as personal care aides and job coaches.
- Make decisions on how the funding they receive is spent, including whether it should be used for in-home care, community activities, transportation, or other services.
3. Enhanced Quality of Life
The primary goal of Self-directed services is to improve the individual’s quality of life by:
- Promoting independence and self-determination.
- Allowing them to participate in a meaningful life within their desired community.
- Encouraging them to make decisions about how they want to live their lives rather than being limited by traditional models of support.
How can we decide whether Self-Direction is right for us?
Does Self-Direction sound intriguing? The Self-Directed model of funding is different from traditional agency-directed care models and it’s empowering for many individuals with disabilities and their families. When transitioning from high school to adult services, ask your transition team to learn more about this option.
Good to know
Each state agency may offer a different way to manage and support self direction so families should explore this option carefully. Some state agencies are offering information sessions and training on Self-Direction. Contact your local state agency for information.
Tip for Massachusetts families
In 2014, the Real Lives Law was passed to give people in Massachusetts with disabilities and their families the right to choose the services and supports that they need through the Department of Developmental Services (DDS). The law states that DDS needs to educate their staff and those they serve about Self-Direction to ensure there is access to information on their options. Massachusetts DDS holds ongoing training on Self-Direction.
Self-directed programs are often built around Person-Centered Planning, meaning that the individual with disabilities is highly involved in their life planning.
What is Person-centered planning?
Person Centered Planning (PCP) is best started during transition planning in high school and can continue into early adulthood. It is an empowering approach to help individuals with disabilities and their families make decisions about the services and supports they need to live a fulfilling life. Ask your high school special ed team or Transition Specialist for guidance on Person-Centered Planning.
Read this article for more information about Person-Centered Planning
Tips for getting the most out of SD funding
Managing a Self-Direction program is empowering but can be complicated for families getting started. Here are tips to get the most out of SD Funding.
- Understand the Process – attend trainings and talk to other parents
- Consider Options – what does your child want to do to fill their day? What community connections are available in your area?
- Create an Individual Service Plan or schedule that outlines the vision and plan for your child’s day. Use our family/student examples in the section below to help you consider activities!
- Explore Supports. Where will you find and hire staff? Will you find them on your own or contract with an agency.
- Research the responsibilities needed to manage a SD budget and how to create a system.
- Consider and explore options for transportation.
- Join parent groups on social media. Ask questions and build relationships!
Transition tip
If you are interested in exploring Self Direction but not sure if it is the right fit, speak to your case manager about other Adult Services models including Agency with Choice or the traditional model. It is good to explore all options.
Some examples of what Self-Direction might look like
It takes planning and organization to get Self-Direction off the ground, including interviewing and hiring staff and then scheduling their hours and activities. Want to see some examples of how families are doing this?
Here are real job descriptions, postings and flyers that families have used to hire staff (often called Skills instructors, Life coaches, Trainers, Community coaches, or Buddies).
- Job Description for Direct Support Staff
- Job description/posting for a Medically Complex Intensive Skills Trainer
- Job Description for an Adult Life Coach
- Job Flyer posting for a Part-time Adult Life Coach
Also, take a look at these two real-world examples of how families and young adults are scheduling and structuring their staff hours and activities.
- Sample schedule #1 includes hours from parents and a direct support staff member. Direct Support staff hours are color-coded.
- Sample schedule #2 includes hours from a Personal Care Attendant (PCA) and direct support staff. Parent, PCA and direct support staff are color-coded.
Ready for more? Read this.
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