Self-Direction and Adult Autism
Self-Direction is a way for adults with intellectual or developmental disabilities (IDD) to have more choice and control over their supports. Self-Direction is offered through the Department of Developmental Services (DDS).
Instead of fitting into a set program, Self-Direction allows the person, often with help from their family and significant friends, to decide:
- Who provides support
- When support happens
- How support fits into everyday life
Many families choose Self-Direction over traditional services because they see it as more personal and flexible.
Who Is Self-Direction Helpful For?
Self-Direction may work well for families who:
- Want more control and consistency
- Prefer familiar, trusted staff
- Want supports built around everyday life
- Are prepared to think ahead about the question of “Who will manage this in the future?”
Self-Direction may be harder for families who:
- Do not want or are unable to be involved in managing staff
- Need very intensive medical care without strong backup
- Do not have someone who can help oversee supports
What Supports Can Be Self-Directed?
With DDS approval, Self-Direction may cover:
- Help at home or in-home supports for independent living
- Community activities
- Job or volunteer support
- Learning daily living skills
- Transportation
- Respite for families
Supports can often be arranged in ways that feel more natural and less program based.
If you are enrolled in MassHealth, you can explore how your long term supports or services may complement Self-Direction funding. Family support agencies in your region can assist you in determining eligibility and possibilities.
What Families Are Usually Involved In
Families often help with:
- Interviewing and choosing staff
- Teaching staff about routines, preferences, and safety needs
- Helping with schedules and communication
Depending on the type of Self-Direction, an agency may help with:
- Paying staff
- Background checks
- Required trainings
- Legal paperwork
- Ongoing guidance and support
You are not expected to do everything yourself.
Two Types of Self-Direction
There are two types of Self-Direction. The main differences between them are who is the legal employer of staff and administrative responsibilities.
In Agency with Choice, you help choose staff, but an agency is the legal employer.
What this looks like:
- You and your adult child help interview and choose staff
- The agency:
- Hires and pay staff
- Handles payroll and taxes
- Completes background checks
- Provides required trainings
Why families choose this option:
- Less paperwork and legal responsibility, but individuals or families must maintain receipts and related documents for which they are reimbursed outside of staffing.
The co-employer agency requires copies. - Built-in support and backup
- Easier to manage as parents age
- Easier to manage over time
Participant-Directed Program (PDP):
In Participant-Directed Self-Direction, you are the employer.
What this looks like:
- You hire, train, and supervise staff
- You are responsible for:
- Payroll and timesheets
- Taxes and employment rules
- Scheduling and coverage
- Ongoing management of the self-direction contract with DDS
Why families choose this option:
- More control
- Long-standing, trusted caregivers
- Families with strong administrative support
Challenges to consider:
- More paperwork
- Legal responsibility as an employer
- Need for reliable backup plans
If you utilize self-direction and need to learn more about personal advocacy for supports, learn more here.
Key Takeaways
Self-Direction allows supports to be shaped around the person, not a program. It is optional and can be combined with traditional DDS services. For example, Self-Direction can be used for residential or housing while attending a traditional day services program.
There are two types, both offering choice and flexibility. They differ in responsibility:
- Agency with Choice offers shared control with less responsibility
- Participant-Directed offers full control with full responsibility
For many aging parents planning ahead, Agency with Choice provides flexibility without overwhelming responsibility, while keeping the person at the center. Both options require a long-term plan for succession if a parent or sibling plays a major role and Self-Direction is to continue after the key caregiver or supporter is no longer available.
Adult Autism
Adults with autism, Prader-Willi Syndrome, or Smith-Magenis Syndrome who do not have an intellectual disability may receive adult services from the Department of Developmental Services (DDS) if they have a developmental disability. For the rest of this overview, we’ll reference “adults with autism,” but it applies to those who have the other diagnoses as well.
To access DDS services, an individual must apply for eligibility. Once eligibility has been determined, an individual may get DDS services. Learn more in our eligibility section or visit the DDS site and scroll down for adult services.
If you want to learn more about adult autism services, we encourage you to reach out to an Adult Autism Support Center, funded through DDS, while preparing to apply. The center staff can assist you in completing the application. You can find your DDS area office through this link.
Once determined eligible for services by DDS, individuals will receive a service plan and information on how much funding they will receive. Individuals may use these funds to self-direct their individual services or apply them to traditional services managed by provider agencies.
Services are based on goals and available resources and depend on the region where an individual resides. They include:
- Support Groups and Trainings: Support groups, trainings, social events and outings are held in different regions. Some of these activities may be free of charge. Here is a link to one region’s calendar which includes more than adult autism services.
- Autism Coaching: 1:1 support between the adult with autism and a trained coach. Coaches help individuals set and achieve goals related to independence, employment, education, and social connection.
- Pre-Engagement: For adults who are socially isolated and have a hard time participating in groups or community activities. (Not everyone will need this service).
- College Navigation: Coaching and support for autistic college students in Massachusetts, focused on executive functioning, navigating campus life, mental health and academic supports, communication with teachers, and online tools for learning.
- Individualized Home Supports (IHS): Support and supervision to live and maintain housing, ongoing learning in areas such as personal finance, health, shopping, and safety.
- Adult Companion: Non-medical care, socialization, and monitoring. Could include assistance with planning meals or other daily household activities such as shopping or laundry.
- Community-Based Day Supports (CBDS): This traditional service is offered through providers. Work on pre-employment skills, life skills learning, support volunteering in an individual’s community, and connecting to other community activities.
- Flex-funding: Some funds can be allocated in the adult’s personal spending plan for essential services that require cash. This needs to be planned and approved in advance each year and individuals must provide receipts to document usage. There are caps and allowable uses.
- Go to Self-Direction section here to begin learning about this option. Though individuals have more flexibility with self-direction (doing it themselves or through “agency with choice”), it requires more personal responsibility including recruitment of staff or identifying community options and the paperwork to document an individual’s services, costs, and related information.
- Adults who need more support after Turning 22: Some individuals are eligible for additional funding because of needs identified in the plan developed through the autism service coordinator or their adult autism center. This typically requires personal advocacy not only in documenting the need, but requesting a formal meeting to review any existing plan.
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