Transition Planning for Youth with Disabilities

by Linda Long-Bellil

Introduction:

The transition from youth to adulthood is fraught with anticipation and anxiety for all children and their families. But, for children with disabilities there may be more than the typical amount of anxiety. The steps that might naturally follow for non-disabled children, e.g. following the path of one’s parents into a particular college or trade, may or may not be the appropriate next steps for a child with a disability, or may require ongoing services and supports. Hard-won entitlements to children’s services may evaporate as the child comes of age, and longstanding relationships with medical providers may be disrupted. Role models with disabilities may be few and far between. All of these factors combine to make it difficult for families and children to visualize what adulthood will look like and discern the steps forward to what can be a new and exciting stage of life.

Building Skills:

Preparation for adulthood actually starts very early in a child’s development as families come to understand their child’s abilities, in addition to their disabilities, and work to help her build skills in areas that will serve her well later in life. In addition to academic skills, these may include things such as organizational skills, manual skills, self-advocacy skills and overall work habits.

Several programs exist to help young people build these skills. The Transition to Adulthood (TAP) program, funded by the Massachusetts Rehabilitation Commission (MRC), is offered through four independent living centers and provides services ranging from peer mentoring to advocacy for youth ages 14-22. Partners for Youth with Disabilities (PYD) offers its "Young Entrepreneurs" program, in which adult mentors work with youth to help them build job-related skills and plan for future careers. The Student Independent Living Experience (SILE) program based at the Massachusetts Hospital School works with children to enhance their independent living skills. Easter Seals of Massachusetts offers job training and assistive technology services. Contact information for all of the programs mentioned in this article is listed here.

Managing their own medical care is one of the most important skills that children can learn to do step-by-by step as they grow. Families and clinicians can facilitate this process over time by gradually, and to the extent feasible, increasing the level of responsibility given to children for tasks like making their own appointments or writing down a list of questions for their doctors. One resource in this area is PYD’s "Making Healthy Connections" program which teaches young people how to manage their own care and navigate the health care system.

Clinicians can also be an important resource during the transition process. A useful guide for health care providers working with families on transition issues is the booklet “Transition Planning for Adolescents with Special Health Care Needs and Disabilities.”  Both this manual and a similar guide for families can be downloaded, along with other helpful publications, from the Institute for Community Inclusion (ICI) web site.

Families can also contact the Department of Public Health (DPH). DPH has resource specialists who can refer families to care coordinators and other assistance. Also, starting in the Fall of 2006, additional training for care coordinators on transition issues is scheduled to be offered by the Massachusetts Consortium for Children with Special Health Care Needs, a policy and planning organization. Care coordinators interested in the training should contact New England SERVE. This training is supported by the "Moving Forward Together" grant funded by the federal Maternal and Child Health Bureau, which is also funding other activities such as Youth Advisory Councils for young adults ages 16-26, who will offer input on the training process.

Public Systems to Support Transition:

During the teenage years, youth become eligible for transition-focused public services and supports. There are two formal transition processes. One is the school transition planning process required by the Individuals with Disabilities in Education Act (IDEA), which, as of 2004, requires schools to include goals, assessments and supports necessary for transition in the Individualized Educational Plan (IEP) "that will be in effect when a child turns 16." For many children this will mean that formal transition planning should begin at age 15.

Entitlement to services provided as part of an IEP ends at the age for 22. For this reason, the second transition process, known as the Chapter 688 or "Turning 22" process, addresses how a child’s daily living and other needs will be met as an adult. Chapter 688 requires school systems to refer a child who may need adult services to the appropriate agency at least two years before graduation or before the child turns 22, whichever comes first. That agency then determines eligibility for adult services and works with eligible youth and families to put together an "Individualized Transition Plan (ITP)." Because adult services, unlike children’s services, are not an entitlement, i.e. they do not have to be provided to every eligible person, these services may have waiting lists. Therefore, parents should urge their school system to initiate the Chapter 688 process as soon as possible. The state Department of Education has a Bureau of Transitional Planning that oversees these activities and a very helpful web page describing how transition works, along with links to additional resources.

Each agency has its own system for addressing transition needs and staff who can help. For example, every Department of Mental Retardation (DMR) area office has a transitional coordinator who works with young adults 18-22 and their families through the Turning 22 process to help them obtain appropriate adult DMR services. MRC staff can help youth access services such as assistive technology and the Supported Living program, which provides care coordination to facilitate independent living. The Massachusetts Commission for the Deaf and Hard of Hearing, the Massachusetts Commission for the Blind, and the Department of Mental Health can all provide similar assistance.

Families and youth can get help for navigating these state systems from organizations such as the Federation for Children with Special Needs. The Federation regularly conducts trainings on transition and has an upcoming training scheduled for early May. (See sidebar.) Federation staff can also help families with advocacy. Support is available from Massachusetts Families Organizing for Change, Family TIES, a program funded by DPH, and other groups as well. When necessary, referrals and assistance with legal issues and benefits information may be available through the Disability Law Center.

The Institute for Community Inclusion has several brochures available on its web site to guide families through the transition process. ICI also has an innovative new web site called "ThinkCollege.net" (www.thinkcollege.net) with information for youth, families and professionals on colleges, financial aid and other resources for individuals with cognitive disabilities and other non-traditional students who, in the past, may never have considered going to college.

Conclusion:

The transition process is a good example of how "it takes a village to raise a child." Despite all the obstacles, more opportunities are available to youth with disabilities than ever before. With the help of their families, clinicians, school systems and other service providers, many young people with disabilities have the potential to live happy, healthy and productive adult lives in the community.