CE/CME

Transition to Adult Care: Services for Children and Youth with Special Health Care Needs

Welcome to the training on Transition to Adult Care: Services for Children and Youth with Special Health Care Needs provided by the Texas Health and Human Services Commission (HHSC) and the Texas Department of State Health Services (DSHS).

Credit Hours: 1.00 CE

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Goal

The goal of this module is to equip Texas Health Steps providers and other health care professionals to initiate and implement health care transition planning services for children and youth with chronic health conditions or disabilities at pivotal points in their development, especially as they approach school age, adolescence and adulthood.

Target Audience

Texas Health Steps providers and other interested health care professionals.

Specific Learning Objectives

After completing the activities of this module, you will be able to:

  1. Formulate a strategy to address the health, education and social needs of all children and youth, with emphasis on individuals with special health care needs, at key transition points, especially as they approach school age, adolescence and adulthood.
  2. Differentiate and integrate the functions of health care professionals involved in transition assistance for youth with special health care needs.
  3. Apply legal requirements and appropriate guidelines for aiding the transition of children and youth with special health care needs as they approach school age, adolescence and adulthood.

This module focuses on providing support for children and youth with chronic health conditions and disabilities to help them and their families make a smooth transition to adult care. The module provides recommendations and resources to help health care providers assist children and their families at key transition points, beginning in early childhood and as children reach school age (age 5 or 6 years). Some recommendations and resources could be beneficial to typically developing children and youth as well.

For the purposes of this module, the term “health care” applies to a wide range of coordinated, multidisciplinary services, including services by pediatricians and other primary care providers. The term “parent” also implies guardians and caregivers. 

Note: The module uses the federal Maternal and Child Health Bureau (MCHB) definition for children with special health care needs: “Those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

Please note this module expires on 7/6/2026.

This module was released on 7/6/2023.

Helpful Resources to Share with Patients and Families

Courageous Parents Network (CPN).
Helps those caring for children with serious illness medical complexity by providing resources and tools that reflect the experience and perspective of other families and clinicians.

Got Transition.

Health Care Transition Initiative, Institute for Child Health Policy, University of Florida Health Care Transition Workbooks. Offers separate health-care transition workbook for ages 12 through 14 years, 15 through 17 years and ages 18 years and older.

National Alliance for Caregiving.

National Disability Rights Network. Supported Decision Making in Health Care & Medical Treatment Decisions (Video). (2019).

Navigate Life Texas. Offers comprehensive, relevant and reliable information for families, professionals, advocates and anyone working with children who have disabilities and their families. Sponsored by the Texas Interagency Task Force on Children with Special Needs.

Pacer. Transition to Adult Health Care. (n.d.)

Parent Companion First Five Years, a bilingual website focusing on young children with disabilities. It was created to comfort, inspire and connect parents to helpful disability resources.

Social Security Administration’s Benefits for Children with Disability brochure.

Social Security Administration. (2019). What You Need To Know About Your Supplemental Security Income (SSI) When You Turn 18.

Texas Department of Family and Protective Services. Preparation for Adult Living Program.

Texas Department of Family and Protective Services, Education and Voucher Training (ETV) Program.

Texas Department of Family and Protective Services. Circles of Support and Transition Plan Meetings web page.

Texas Department of Family and Protective Services. Extended Foster Care, including a brochure for youth in English and Spanish.

Texas Department of State Health Services, Texas Immunization Registry (ImmTrac2) Forms.

Texas Health and Human Services Commission, Children with Special Health Care Needs (CSHCN) Services Program. Family Support Services information.

Texas Health and Human Services Commission. Community Attendant Services.

Texas Health and Human Services Commission. Day Activity and Health Services.

Texas Health and Human Services Commission. Disability services web page.

Texas Health and Human Services Commission. Independent Living Services, including a list of independent living centers in Texas.

Texas Health and Human Services Commission. Person-centered Planning.

Texas Health and Human Services Commission. State Supported Living Centers.

Texas Health and Human Services Commission. Take Time Texas, a web page that provides a state inventory of respite services.

Texas Parent to Parent, peer support for parents of children with special health-care needs.

Transition and the Future (Texas Project First)

Texas Workforce Commission. Vocational Rehabilitation Services.

Featured in the Course

American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, and Transitions Clinical Report Authoring Group. (2018). Clinical Report: Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics, 142(5): e20182587.

American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians. (2011, reaffirmed 2015). Clinical Report: Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics, 128(1):182-200. (This version of the report contains the AAP algorithm).

American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians. (2002). A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs. Pediatrics, 110(Supplement 3):1304-1306.

Disability Rights Texas. (2011). Legally Adequate Consent.

Disabato, J. A., Mannino, J. E., & Betz, C. L. (2019). Pediatric Nurses' Role in Health Care Transition Planning: National Survey Findings and Practice Implications. Journal of Pediatric Nursing, 49:60-66.

Got Transition (AAP). (2022). 2022 Coding and Payment Tip Sheet for Transition from Pediatric to Adult Health Care (PDF).

Institute for Educational Leadership. The 2020 Youth Transition Report: Outcomes For Youth And Young Adults With Disabilities. (2020.)

National Survey of Children’s Health Interactive Data Query (various years).

Lebrun-Harris, L. A., McManus, M. A., Ilango, S. M., Cyr, M., McLellan, S. B., Mann, M. Y., White, P. H. (2018). Transition Planning Among US Youth With and Without Special Health Care Needs. Pediatrics, 142(4):e20180194.

Li, L., Polanski, A., Lim, A., & Strachan. Transition to adult care for youth with medical complexity: Assessing needs and setting priorities for a health care improvement initiative. (2022). Journal of Pediatric Nursing, 62:144–154. (Abstract).

McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P.W., . . . Strickland, B. (1998). A new definition of children with special health care needs. Pediatrics, 102:137-40.

National Disability Rights Network. Supported Decision Making in Health Care & Medical Treatment Decisions (Video). (2019).

North Carolina Division of Public Health, Children and Youth Branch. (2010). Health Care Transition: A Health Care Provider’s Guide to Helping Youth Transition from Pediatric to Adult Health Care. Appendix D: Provider Transition Checklist and Timeline, Institute for Community Inclusion at Children’s Hospital, Boston.

Schraeder, K., Allemang, B., Felske, A. N., Scott, C. M., McBrien, K. A., Dimitropoulos, G., & Samuel, S. (2022). Community based Primary Care for Adolescents and Young Adults Transitioning From Pediatric Specialty Care: Results from a Scoping Review. Journal of Primary Care & Community Health, 13: 21501319221084890.

Texas Department of Family and Protective Services. (n.d.). Transitional Living Services.

Texas Education Agency. (2022). Foster Care and Student Success: Texas Systems Working Together to Transform Education Outcomes of Students in Foster Care.

Texas Education Agency. (2022). Education Service Centers.

Texas Health and Human Services Commission. (n.d.). Person-centered Planning.

Texas Medicaid & Healthcare Partnership. (2020). Texas Medicaid Provider Procedures Manual.

U.S. Department of Education, National Center for Special Education Research. (2011). The Post-High School Outcomes of Young Adults With Disabilities up to 8 Years After High School: A Report From the National Longitudinal Transition Study-2 (NLTS2).

U.S. Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB). (2022). Children and Youth with Special Health Care Needs National Survey of Children’s Health (NSCH) Data Brief.

University of Massachusetts Boston, Institute for Community Inclusion. (2012).

Continuing Medical Education

The Texas Department of State Health Services, Continuing Education Service is accredited by the Texas Medical Association to provide continuing medical education for physicians. 

The Texas Department of State Health Services, Continuing Education Service designates this enduring material for a maximum of 1.00 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Continuing Nursing Education

The Texas Department of State Health Services, Continuing Education Service is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center’s Commission on Accreditation. The Texas Department of State Health Services, Continuing Education Service has awarded 1.00 contact hour(s) of Continuing Nursing Education.

Social Workers

The Texas Department of State Health Services, Continuing Education Service under sponsor number CS3065 has been approved by the Texas State Board of Social Worker Examiners to offer continuing education contact hours to social workers. The approved status of The Texas Department of State Health Services, Continuing Education Service expires annually on December 31. The Texas Department of State Health Services, Continuing Education Service has awarded 1.00 contact hour(s) of Continuing Social Work Education.

Certificate of Attendance

The Texas Department of State Health Services, Continuing Education Service has designated 1.00 hour(s) for attendance.

General Disclosure

One of the requirements of continuing education is disclosure of the following information to the learner:

  1. Notice of requirements for successful completion of continuing education activity. To receive continuing education credit the learner must successfully complete the following activities:
    • Create a Texas Health Steps account.
    • Complete on-line registration process.
    • Thoroughly read the content of the module.
    • Complete the on-line examination.
    • Complete the evaluation.
  2. Commercial Support.
    The THSTEPS Web-based Continuing Education Series has received no commercial support.
  3. Disclosure of Relevant Financial Relationships.
    The THSTEPS Continuing Education Planning Committee and the authors of these modules have no relevant financial relationships to disclose.
  4. Non-Endorsement Statement.
    Accredited status does not imply endorsement of any commercial products or services by the Department of State Health Services, Continuing Education Service; Texas Medical Association; or American Nurse Credentialing Center.
  5. Off-Label Use.
    Using a disclosure review process, the THSTEPS Continuing Education Planning Committee has examined documents and has concluded that the authors of these modules have not included content that discusses off-label use (use of products for a purpose other than that for which they were approved by the Food and Drug Administration).

The following are policies and definitions of terms related to continuing education disclosure:

The intent of disclosure is to allow Department of State Health Services (DSHS) Continuing Education Service the opportunity to resolve any potential conflicts of interest to assure balance, independence, objectivity and scientific rigor in all of its Continuing Education activities.

All faculty, planners, speakers and authors of Department of State Health Services (DSHS) Continuing Education Service sponsored activities are expected to disclose to the Department of State Health Services (DSHS) Continuing Education Service any relevant financial, relationships with any commercial or personal interest that produces health care goods or services concerned with the content of an educational presentation. Faculty, planners, speakers and authors must also disclose where there are any other potentially biasing relationships of a professional or personal nature.

Glossary of Terms

Conflict of Interest: Circumstances create a conflict of interest when an individual has an opportunity to affect Continuing Education content about products or services of a commercial interest with which she/he has a financial relationship or where there are any other potentially biasing relationships of a professional or personal nature.

Commercial Interest: Any entity producing, marketing, re-selling, or distributing health care goods or services consumed by, or used on, patients.

Financial Relationships: Those relationships in which the individual benefits by receiving a salary, royalty, intellectual property rights, consulting fee, honoraria, ownership interest (e.g., stocks, stock options or other ownership interest, excluding diversified mutual funds), or other financial benefit. Financial benefits are usually associated with roles such as employment, management position, independent contractor (including contracted research), consulting, teaching, membership on advisory committees or review panels, board membership, and other activities for which remuneration is received or expected. Relevant financial relationships would include those within the past 12 months of the person involved in the activity and a spouse or partner. Relevant financial relationships of your spouse or partner are those of which you are aware at the time of this disclosure.

Off Label: Using products for a purpose other that that for which it was approved by the Food and Drug Administration (FDA).

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Resources for Health-Care Providers

Transition Resources by Topic

General Information about Transition:

American Academy of Pediatrics guidelines:

Got Transition. Resources about a variety of transition topics for youth, families and health-care providers.

Health Care Transition Initiative, Institute for Child Health Policy, University of Florida Health Care Transition Workbooks.

Navigate Life Texas: Transition to Adulthood. In-depth information for families of children with disabilities or special health-care needs about support, resources and links to available services.

Pathways: The Texas Transition & Employment Guide to a Successful Life After High School for Students with Disabilities. (2021).

Texas Department of Family and Protective Services. Transitional Living Services.

Texas Parent to Parent. Peer support and training to improve the lives of Texas children who have disability, chronic illness and/or special health-care needs.

Transition Readiness Assessment Questionnaire (TRAQ)

Transition Health Care Checklist: Preparing for Life as an Adult

Attendant Services

Texas Health and Human Services Commission's Day Activity and Health Services.

Texas Health and Human Services Commission. Community Attendant Services (personal care services).

Case Management

Texas Health and Human Services Commission. Case Management Providers for Children and Pregnant Women.

Find a community-based organization that provides case management and support services to children with special health-care needs and their families.

Early Childhood Intervention

Early Childhood Intervention (ECI) Services.

ECI Information for Health & Medical Professionals.

ECI Provider Referral and Feedback form.

ECI Qualifying Diagnosis Search web page.

Texas Education Agency (TEA) Rule Eligibility Criteria for Special Populations, including Deaf/Hard of Hearing and Visual Impairment, 10 TAC Section 89.1040.

Education and Employment Resources

Early Childhood Special Education (ESCE) program (formerly known as Preschool Program for Children with Disabilities [PPCD], a title that still may be used on some websites). Provides the many supports and opportunities for Local Education Agency (district and charter schools) staff who provide educational services for children ages birth through 5 years who have disabilities.

Easterseals. Information about education, employment training and life services for children and adults through community and home-based services.

Transition and the Future (Texas Project First)

Head Start, promotes school readiness for children ages 4 years and younger.

National Center on Secondary Education and Transition. Resources, technical assistance and information about secondary education and transitions for youth with disabilities.

National Technical Assistance Center on Transition. Resources to prepare high school graduates for success in postsecondary education and employment.

Texas Council for Developmental Disabilities.
Resource Guide on Higher Education for People with Disabilities. (English)

Resource Guide on Higher Education for People with Disabilities. (Spanish)

Texas Education Agency. Texas Transition and Employment Guide.

Texas Education Agency Educational Service Centers. The TEA has 20 Educational Services Centers in Texas that answer questions about the transition process in schools.

Texas Workforce Commission. Resources for individuals who want to go to school, seek job training or find employment.

College Resources and Programs

Think College. Has a detailed search tool for school choices, as well as other resources, for teens and adults with disabilities.

Texas A&M PATHS
A collaboration with the Institute on Person-Centered Practices and Brazos Valley Center for Independent Living; PATHS provides both core competency and enrichment classes, preparing students to work in their chosen fields of study in a wide range of community settings.

Texas A&M Horticultural Options in Plant Sciences (HOPs)
The HOPS Project is a two semester (approximately 32 weeks) training program to provide instruction and support to individuals with disabilities, who gain the necessary skills and experiences in work readiness to successfully transition into competitive integrated employment in the horticulture industry.

University of Texas E4Texas Program.

University of Washington’s DO-IT (Disabilities, Opportunities, Internetworking, and Technology) Center. College: You Can Do It! web page.

Financial Matters and Resources

FinAid's Financial Aid for Students with Disabilities.

Social Security Administration (SSA): Qualifying for Benefit Continuation After You Turn 18.

Social Security Administration. Supplemental Security Income Program Entry at Age 18 and Entrants' Subsequent Earnings.

Texas ABLE Program.

The Texas Achieving a Better Life Experience (ABLE) Program helps individuals with disabilities and their families save money for disability-related expenses critical to maintaining their health, independence and quality of life.

University of Washington. DO-IT's College Funding for Students with Disabilities.

Health Benefits

Social Security Administration. Disability Evaluation Under Social Security, prepared for physicians and other health-care providers.

STAR Kids. Texas Medicaid managed care for children with disabilities who are ages birth through 20 years. Provides benefits such as prescription drugs, hospital care, primary and specialty care, preventive care, personal care services, private duty nursing, and durable medical equipment and supplies.

STAR+PLUS. Texas Medicaid managed care program for adults with disabilities.

Social Security Administration. Disability Office.

Texas Health and Human Services Commission. Case Management for Children and Pregnant Women.

Texas Health and Human Services Commission. Children with Special Health Care Needs Services.

Texas Department of State Health Services: Consumer Guide to Health Care, for information about Medicaid, Medicaid managed care, and Children’s Health Insurance Program (CHIP) benefits in Texas.

Texas Health and Human Services Commission. Home and Community Based Services (HCBS).

Texas Health and Human Services Commission. Intellectual Disabilities & Related Conditions Assessment Resources.

Texas Insurance Code, Title 8, Chapter 1201, Section 1201.059. Maintaining coverage for adults dependent on their parent’s health insurance.

Texas Medicaid Waiver programs and interest list (wait list):

Signing up for the interest list (a recommended step as early in a child’s life as possible):

  • Call the Texas Health and Human Services Commission (HHSC) toll-free at 877-438-5658 for these Medicaid waiver programs:
    • Community Living Assistance and Support Services
    • Deaf Blind with Multiple Disabilities
    • Medically Dependent Children Program
  • Contact the local mental health authority (LMHA) or the local intellectual and developmental disability authority (LIDDA) for these Medicaid waiver programs:
    • Home and Community-based Services
    • Texas Home Living
    • Youth Empowerment Services

Texas Medicaid Buy-in Program

Housing

Some agencies that may provide local housing information and resources:

Arc of Texas.

Disability Rights Texas. Helpful information for young adults with disabilities who have a goal of buying their own home, including a video about the right to rent or buy a home.

U.S. Department of Housing and Urban Development, Rental Assistance.

Independent Living

Texas Health and Human Services Commission, Independent Living Services. Includes a list of independent living centers in Texas.

United Cerebral Palsy. Provides a variety of resources about independent living, including home modification information.

Legal Issues

Disability Rights Texas. Protection and advocacy agency for people with disabilities in Texas.

Supported decision-making options—Guardianship:

Texas Council for Developmental Disabilities.
Extending Health Insurance: What You Need to Know (English).

Medical Transportation

Texas Health and Human Services Commission, Medical Transportation Program.

Organizational Resources

Care notebooks:

Health-tracking Applications

Surveys & Studies

American Academy of Pediatrics. (2018). Clinical Report: Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home.
National Survey of Children’s Health Interactive Data Query (various years).

National Longitudinal Transition Study-2 (NLTS2).

Technology Assistance

Quality Indicators for Assistive Technology (QIAT). Identifies, disseminates and implements a set of widely-applicable quality indicators for assistive technology in school settings.

Texas Health and Human Services Commission. Texas Specialized Telecommunications Assistance Program (STAP).

Texas Technology Access Program. List of resources and possible funding sources in Texas for a variety of adaptive needs.

Texas Workforce Commission (TWC). Assistance with acquiring adaptive aids, vehicle modifications or other technologies, including services for those who are blind or who have hearing impairments.

Vocational and Recreational Opportunities

Centers for Independent Living. CILs are nonresidential, private, nonprofit organizations that help people with disabilities achieve their independent living goals.

Easter Seals

The Arc of Texas

CPATH. Central Texas-based non-profit organization created to support individuals with cerebral palsy.

Special Olympics Texas

Texas Parent to Parent. Provides support, information and education for families of children and adults with disabilities, chronic and mental health conditions and other health-care needs.

Texas Workforce Commission (TWC). Assistance with acquiring adaptive aids, vehicle modifications or other technologies, including services for those who are blind or who have hearing impairments.