Children with disabilities transition to adulthood in as many different ways as they are unique, each with their own goals, talents, and challenges. California offers a diversity of options in public, private, charter, and non-public schools. Some schools offer robust partnership programs through contracts with the Department of Rehabilitation while others have created their own career-related exploration course or curriculum. In the following pages, we’ll walk you through the transition process and discuss public benefits, college programs, work training, day and community-based programs, conservatorship, independent and supportive living services, and the importance of person-centered planning.

Where are you? Where do you want to be? How do you get there?
Graphic courtesy of PACER, a wonderful resource for transition planning

The Breakdown

Who is responsible, and when?

The transition to adulthood is a team effort that requires the coordination of services from multiple agencies, including your child’s school district, Regional Center, Medi-Cal, Social Security, and the Department of Rehabilitation. For some families, this may also include services from the Employment Development Department (EDD), America’s Job Centers of California (AJCC), Medicare, and/or In-Home Supportive Services (IHSS).  

The school district remains responsible for the provision or coordination of most transition services—including day programs and vocational training—until a student receives a high school diploma or a certificate of completion between the ages of 18 and 22. Once an individual leaves the school district, the responsibility shifts back to Regional Center. Regional Center can provide or coordinate independent living skills training, personal assistance, supportive housing, adult day programs, work opportunities, tailored services, and more. 

Keep in mind that Regional Center is generally the payor of last resort, which means that families are expected to utilize generic resources before Regional Center will fund those services. Generic resources include agencies that have a legal responsibility to serve the general public, and receive public funds for providing those services; some examples include Medi-Cal, Medicare, Employment Development Department (EDD), the Department of Rehabilitation, In-Home Supportive Services (IHSS), and the Social Security Administration. Generic resources also include community organizations such as the Easter Seals Society, America’s Job Centers of California (AJCC), local parks and community centers, and religious organizations, as well as natural supports like friends and family. 

Families in California should also remember that the structure of Regional Center planning and budgeting will change over the next several years as the statewide Self-Determination Program is implemented.


Individual Transition Plan (ITP)

Creating an Individualized Transition Plan, or ITP, is a great opportunity to begin building a road map for your child’s transition by identifying programs, resources, and services your child is interested in.

Planning for the ITP can begin as early in a child’s life as a family or child is interested in doing so. Legally, the school district is required to initiate formal transition planning no later than a student’s 16th birthday, but families can ask for this process to begin before age 16. Parents often find it helpful to hold the transition meeting separate from the annual IEP to allow more time and space to focus on transition services. 

Like the IEP, the ITP is a written plan outlining the supports a student will need as they prepare for passage from school to adult life. The ITP must be based on the student’s needs, preferences, and interests, and reflect the student’s own goals. Objectives, timelines, and the people and organizations responsible for meeting those objectives should be written into the ITP. 

The ITP has two primary components:

  • Establishing educational, residential, social, and recreational goals. Goals are one of the most important topics the ITP will cover, and they should address the areas of independent living, employment (supported employment or other work programs), community-based work training programs, post-secondary education, community integration, and self-determination skills. Just as school districts must provide the least restrictive environment, a transition plan should focus on helping a student live with as much independence and joy as possible. These goals should be measurable, and they should be based on assessments of a student’s achievements and ongoing needs related to education, job training, and life skills. Some students find it helpful to take online surveys to guide them as they determine their life goals and career aspirations, while others may benefit from in-depth, one-on-one, person-centered planning with a disability specialist or career coach or counselor.
     
  • Establishing an interagency linkage. The school should play the role of case manager in creating a collaborative team between the school and other government and public service organizations. This interagency linkage is a key component, ensuring a seamless and smooth transition from school to adulthood. Because agencies outside the school district will be responsible for providing many of these services, it’s important to ensure that representatives from these agencies attend the meeting. Some of the agencies that support students after graduation are the Department of Rehabilitation, your local Regional Center, and college disability service programs. 

Applying for public benefits, or transitioning to adulthood with public benefits

Once a person turns 18, they can apply online for Supplemental Security Income benefits (SSI) through the Social Security Administration. Qualifying for SSI is based on Social Security’s definition of disability and financial eligibility, and automatically includes Medi-Cal coverage. However, those who do not qualify for SSI may still qualify for Medi-Cal. It’s a good idea to stay on top of what public benefits are available, as guidelines for allowable income requirements and various Return to Work and Incentive programs are regularly updated. You might find it helpful to take advantage of resources like Disability Benefits 101 or a disability benefits planner.

You may also want to consider setting up a special needs trust (SNT) and/or an ABLE account,  both of which are designed to allow a person with disabilities to hold assets without affecting their eligibility for social services. You can read about both of those options here.

Post-secondary college

In the last eight to ten years, there has been a real shift in post-secondary programs for students with disabilities who require academic, social-emotional, and other supports that extend beyond what is typically offered at two- and four-year institutions. There is now a wealth of post-secondary options throughout California for students who have been diagnosed with an intellectual or developmental disability, and who have graduated from or completed their high school transition plan. These programs include College to Career (C2C) programs throughout the state, Pathway at UCLA Extension, a couple of Cal State sites such as Fresno State and CSUN, the College of Adaptive Arts in San Jose, and private college opportunities. Some focus on academics, while others focus on both academics and employment. We can provide a detailed list of programs and their admission criteria upon request. 

Work training programs

Many Regional Centers offer resource fairs and/or career fairs in the spring. These fairs can be very useful to families when their child is in their early-to-mid high school years, as they showcase many of the resources, programs, and services that are available. Exploring the options early will allow your child to visit the programs they are interested in with plenty of time to prepare and make decisions.

Work training programs run the gamut from trade-specific training to targeted skills such as resume building and computer skills. Many vendors offer Supported Employment services that provide ongoing coaching to support permanent, paid positions. Specific trades can be explored in areas like culinary arts or retail; other companies cater to budding artists by marketing, selling, and commissioning artwork. Many job training programs in packaging and manufacturing can lead to employment at the same site. These are often through a formal apprenticeship program, a PIP (Paid Internship Program), a college setting, and/or a worksource center like America’s Job Centers of California (AJCC).

Depending on a program’s criteria, families may be able to submit an application before a student completes high school. Agencies vendored with one Regional Center may be easily vendored with another, so keep that in mind if an agency of interest is not with your assigned Regional Center. The biggest caveat to Regional Center–supported programs is the wait list. While some programs have immediate availability, others can be a one- to three-year wait. 

Please let us know if you’d like to find out more about some of the programs available in California. From AbilityFirst to Common Roots Farm to Actors for Autism and Inclusion Films to Microsoft, you might be surprised at the variety of opportunities.

Adult day or community-based programs

There are a variety of community-based programs that can fill a young adult’s life with learning, enrichment, increased independence, community outings, life skills training, and socializing. Some local examples include the Exceptional Children’s Foundation, Giant Steps, and New Horizons. Many of these programs reinforce daily living skills that are essential to living as independently as possible, and some, like Able Arts Work, focus on self-enrichment and the arts. The developmental disability community movement is all about self-determination and independent living. Check out the Employment First movement, which embodies the achievement of self-realization through competitive integrated employment (CIE) and a person-centered planning approach. 


The Low-Down
Person-Centered Planning (PCP)

To make a person-centered plan means to focus on the whole person and their desires, interests, preferences, and dreams. It means to begin with the individual’s vision of themselves in the future, bringing together the various people and organizations involved in their life, and working together to help bring that vision to reality. 

Cathy Gott, mother of two, founder of Education Spectrum and Danny’s Farm, and a consultant for ETTA, talked with us about the importance of person-centered planning.

Our children with ASD are now thirty-one and twenty-six, but when they were first diagnosed, they were referred to as “consumers" by the Regional Center. The "consumer" was not a part of the planning process; rather, parents and professionals made decisions on their behalf. As our society has progressed, so has the way we deliver services. 

Our son, Danny, receives a service called Supported Living Services (SLS) and is delivered by a vendor of the Regional Center. The SLS provider utilizes a PCP approach, and it has been invaluable for us. Danny moved out of our home seven years ago; the PCP includes having a monthly "circle meeting." Every month, Danny's circle of support meets and discusses relevant issues. I attend as many of these as I can, but the circle can include his job coach, his therapist, his Regional Center coordinator, and his caregivers with whom he lives. 

I have learned so much through this process, and so much of it has been about "letting go" for me. I'm sure that many parents raising children with disabilities can relate. We’ve had to be in charge of so many things in order to provide the very best care for our children. These days, Danny doesn't want me to be in charge of his life. And it has been a process for me to learn to let go and allow him the dignity of making as many decisions about his life as he possibly can. This also means giving him the dignity to make his own mistakes—and to learn from them—just like we did (and still do).

Having a "circle" around Danny has enabled me to be Danny's mom. I'm not his therapist, I'm not the one helping him with his daily household chores. I'm not the one checking on him at work. I'm not the one making sure he gets where he needs to be. I get to be his mom, and that's the role I am privileged to call my favorite. 

Person-Centered Planning
Image courtesy of the Center for Self-Determination

Conservatorship and Alternatives

When a person turns eighteen, they gain all the rights and responsibilities that come with adulthood — including, of course, the awesome responsibility of making sound medical, financial, and educational decisions. Supporting our young adults in making these decisions is something many parents and caregivers worry about.

There are several care options parents can consider to help them support their adult children to the fullest, most appropriate extent while allowing them to foster their skills and independence. These include supported decision-making (SDM) with or without power of attorney, and limited conservatorships.

With SDM, an adult with disabilities forms an agreement, either formal or informal, with a team of advisors to help them make decisions. The young adult retains all their decision-making power and can choose trusted team members based on their individual goals. For example, if they need support managing their money, they can ask a friend, family member, or advisor to help them create and follow a budget. The benefits of SDM is that it allows individuals with disabilities full independence and retention of their rights, it does not involve legal proceedings, and it supports them in learning to make decisions the same way other adults do: by consulting with people they trust. 

SDM can be supplemented with a durable power of attorney, if necessary, allowing another adult to access a young person’s education and medical records or to make decisions when needed regarding their healthcare, legal matters, and finances.

A limited conservatorship is formed by filing a petition with the court. If granted, a judge will appoint a responsible person (the “conservator”) to care for another adult (the “conservatee”) who is unable to care for themselves. While conservatees may retain some rights, the conservator is granted decision-making power, which could include medical and personal decisions, financial decisions, or some of both. The idea behind a limited conservatorship is to support an individual in gaining more independence. According to Mark Woodsmall, limited conservatorships don’t need to last forever, and should be set up with “an eye for limited power.” A full conservatorship is often permanent, and does not grant any decision-making power to the conservatee.

You can read much more about supported decision-making and both types of conservatorships here.

Independent and Supported Living Services

Independent Living Services (ILS) are designed to support adults with disabilities while they are still living at home with their families. Typically, recipients of ILS already possess basic self-help skills (or employ personal care aides to assist with these skills), and need functional training for activities such as household chores, laundry, budgeting, cooking, and grocery shopping. ILS are vendored and monitored by Regional Center, and are generally not provided long-term; the hope is that once a person acquires the skills to live independently, the services can be faded out. 

Supported Living Services (SLS) are provided to Regional Center clients who are ready to find and move into their own home or shared living situation, and are specific to each person’s individual and ongoing support needs. SLS can help with activities of daily living, including social and behavioral training; maintaining a home; assistance with choosing roommates and personal and/or health aides; purchasing furniture and other necessities; and managing finances, to name a few. These services are designed to support an individual’s progress toward long-range personal goals and foster a meaningful place in their community. Because these are often life-long endeavors, SLS are offered for as long and as often as needed, with the flexibility required to meet a person’s changing needs over time, and without looking solely at the level of disability.

People who choose to live in their own homes will often need information about affordable housing options, sources of financial support such as Supplemental Security Income (SSI), and how to stretch a limited budget to meet living expenses. These are ordinary challenges that are inseparable from a truly self-directed life in the community. For the many adults for whom SLS make sense, such challenges are often road signs on the path to a satisfying life. Some Regional Centers offer roommate-matching opportunities and referrals to affordable housing options. In some areas you will also find residential housing programs, although these are fewer and fewer, and typically quite competitive to get into, as they tend to remain at capacity. You can read more here about housing, independent living, and other program options.

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