Transition to Adult Care

Youth with special health care needs receive services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.

On this page:

• Self-Determination (Video)
• Moving from Pediatric to Adult Providers (Video)
• Health Insurance & Service Eligibility (18-21) (Video)
• Medical Assistance and Operations Memo (Video)
• Managed Care Options
• Individualized Health Care Plans
• Guardianship, Powers of Attorney, Supported Decision Making
• Special Needs Trust (SNT)
• Higher Education Disability Services

Self-Determination (Video)

This video will give you personal insight into the importance of self-determination in the lives of transitioning youth from both an individual and parent perspective.

Self-Determination and self-advocacy skills enable CYSHCN to assume greater responsibility and control of their life. Skills include:

• — Speaking up for yourself
• — Understanding your needs
• — Knowing your rights
• — How to ask for help
• — How to find and use available resources
• — How to make appropriate choices
• — Problem solving
• — Taking control and responsibility

Moving from Pediatric to Adult Providers (Video)

This video gives an inside view into the exam room of what happens during the transition process. Considerations related to transition are discussed with patients, a parent, and an adult provider followed by an appointment with the adult provider.

Transition from pediatric to adult health care is a process. It requires planning and preparation. It is important to start early, but it is never too late.

Health Insurance & Services Eligibility (Video)

This video points out important changes that families need to be aware of when a young adult turns 18, and then 21. Medical Assistance changes are highlighted. Waivers and Medicare coverage are introduced.

*NOTE: This video does not address coverage under the new Community HealthChoices program that began in Southwestern PA on January 1, 2018.

Medical Assistance and Operations Memo (Video)

This video explains the Ops Memo from various perspectives.

An Operations Memo (Ops Memo) is a guidance tool for HealthChoices organizations, and explains the provisions of overlapping visits with pediatric and adult providers to help families of YSHCN with the transition to adult care.

Managed Care Options

Below is a set of resources to help you understand managed care options.

• — Managed Care Ops Memo, an Operations Memorandum is a tool to describe policies and procedures. This Ops Memo gives guidance to MCOs about their responsibility related to transitioning youth who are medically fragile.
• — Summary of the Managed Care Ops Memo, this summary is a user-friendly explanation of the Ops Memo and its provisions.
• — Stepping Stones Ops Memo, created by the PEAL Center, the Stepping Stones explains the Ops Memo in simple language.
• — Data Dictionary, the Data Dictionary defines the terms used in the Ops Memo

Individualized Health Care Plans

An Individualized Health Care Plan (IHCP or IHP) is a document that addresses a student’s medical needs during the school day. IHCPs are not standardized and may vary. If a student has an IEP or 504 plan, then it’s important to include an IHCP.

Transition to Adult Health Care Individualized Health Plans (Video)

This video defines the IHCP and its importance in an academic setting.

In this video:

• — Explanation of an Individualized Health Care Plan (IHCP)
• — What an IHCP should contain
• — Who should be involved in the development of an IHCP
• — Where and how to include an IHCP in an IEP
• — Importance of implementation

Got Transition Resources

Tools and resources to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families. Resources include, but are not limited to:

• — Adult Model of Care/Transfer to Adult Provider
• — Cultural Competence
• — Developmental Disabilities and Transition
• — Education and Transition
• — Employment and Transition
• — Guardianship and Decision-Making
• — Health Insurance
• — Independent Living and Transition
• — Medical Home
• — Self Care
• — SSI Benefits and Transition
• — … and more!

Stepping Stones – Health Care Transition: Tips for Parents and Young Adults

A PEAL created tool for families and young adults to navigate the transition from pediatric to adult medicine.

Guardianship, Powers of Attorney, Supported Decision Making

When an individual reaches the age of 18, regardless of any functional limitations or disabilities, she has the legal right to make decisions on her behalf. The next few resources describe Pennsylvania’s guardianship procedures to persons with disabilities, their families, service providers, advocates, and friends.

Guardianship in Pennsylvania, Disability Rights Network Pennsylvania 

Seeking Guardianship for a Loved One, Dennis C. McAndrews, Esq. 

Supported Decision Making (SDM): National Resources Center for Decision Making

• — SDM is a model where the individual with a disability work with others who serve as a support network in order to make choices about his own life.

Special Needs Trust (SNT)

A trust is a legal document that describes how property is held and distributed. SNTs are tools used to hold property for the benefit of an individual with special needs (the beneficiary) so that their public benefits will not be jeopardized. A trustee manages the property and is in charge of spending money on behalf of the beneficiary. There are severe types of special needs trusts.

Higher Education and Disability Services

Disability Services provide support and reasonable accommodations on a case-by-case basis for students with disabilities. Contact the Disability Services Staff at your chosen campus to discuss your needs and needed documentation to arrange for accommodations. For more information and resources:

• — Higher Ed Compliance Alliance
• — Person-Centered Planning
• — Person-Centered Planning: A Toolkit for Transition, The National Center on Secondary Education and Transition (NCSET)