Transition of Adolescents with Special Health Care Needs into Adult-Based Medical Services

Javier Aceves, M.D. Professor of Pediatrics

Continuum of Care Project June 8, 2011

Introduction • New Mexico is experiencing a growing population of

adolescents with special health care needs reaching adulthood.

• Pediatric–based programs and services do not meet their needs

• There are limited system wide strategies to implement this transition into adult –based medical services.

• Academic centers have a responsibility to model this service

Overview • NM statistics of C&YSHCN • What Transition? • Who is in it? • How do we do it? • When does it need to start? • How do we know it has been successful?

NM Statistics • Estimate of 100,000 children and adolescents with a

chronic illness • Of which about 5,000 have a significant disability • About 2,200 live in the Greater Albuquerque

Metropolitan Area • Most C&YSHCN served through the Waiver(s) • Majority of people in Waiver are adults

NM Statistics • In 2006 there were 3,658 persons being served

through the HCBS Waiver • There is an almost equal amount in the “waiting list” • During 2011 legislative session $ 1Million was

appropriated to address the waiting list (50 persons) • There were only 116 persons with I/DD living in

nursing homes. • $318.1 million on Medicaid component of public

I/DD spending (70% is federal)

What Transition? • There are multiple transitions in the life of Children

& Youth with SHCN • Transition from pediatric-based services to adult-

based services is the focus of this presentation

Transitions Developmentally based: Birth → infant → toddler → preschool → school-aged → adolescent → young adult

Transitions In Critical Life Events

• Anniversaries

• Family changes (eg, birth of a new child without special needs, step-parents or siblings, moves, finances)

• Serious diagnoses or changes in the health status of the child

• Deaths

Transitions Among Supports and Services

• Early intervention → preschool

• Grade school → high school

• Vocational school or college → work

Who is in it? • The child-adolescent • The family • The guardian • The primary care physician • Members of all support systems, i.e. school, health

plan, case management, home health servicers, etc.

How do we do it?

• It takes planning! • Have a written plan • Built in flexibility • Focus on the person/family • Inform and include support systems

The Plan

http://hctransitions.ichp.ufl.edu

When to start? • Early! • No later than by 16 years old • Ask person/family of expectations and write them

into goals • Have time tables

History • How did we get here

Brown v. Board of Education

Civil Rights Movement J.F.K. Panel on Mental Retardation (PL 88-156, 88-164)

Public Laws 91-157 94-142

Home & Comm. Based Services (HCBS) waiver . Developmental Disabilities Act

Medically Fragile Waiver Program in NM

NM close the last State Owned Institution for Persons with DD 1997 ADA 1990

Healthy& Ready to Work Legislation/ Personal Autonomy/ Self-determination Integrated employment

Individuals with Disabilities Education Improvement Act (IDEA 101-476))

1954 1960’s 1970’s 1978 P&A

1981 1984

1984 “Jackson v. Fort Stanton 1987”

1996- 2004

Integration of persons with disabilities

“…as close to the main stream of independence and “normalcy” as possible” PL 88-164 lead to UAP)

Expanded services to Definition of DD was expanded. Free & appropriate public education

“ensure that developmentally disabled persons will receive the services necessary for them to achieve their maximum potential…”

Children with SHCN had the option of receiving care at home

NM established a community-based program to serve this population

Centerpiece of community participation. Age-appropriate activities. Valued socially in the community

Changed requirement for a transition plan to start at age 16

IDEA –Transition Services • Results oriented process focused on improving the academic

and functional achievement • Facilitate the child’s movement from the school to post-

school activities including: vocational education, integrated employment, independent living.

• Based on the individual child’s needs and his strengths, preferences and interest.

• To include instruction, related services, community experiences, the development of employment and functional vocational evaluation.

Summary of Performance (SOP)

• In lieu of an exiting IEP • Implies collaboration with adult service agencies in

providing “point of transition” services.

How to measure success? • Some studies focus on vocational placement, social networks,

residential placements and quality of life • National Longitudinal Transition Study-2 (NLTS2) looking at

measuring factors associated with positive outcomes

• Outcome variables include: academic achievements, post secondary education participation, student involvement in transition planning, employment after HS, leisure activities and social involvement.

Relevance of NLTS2

• Appropriate for persons with mild I/DD • Not so for persons with severe I/DD • For persons with severe I/DD parent’s perspectives is more

relevant • Includes parental aspirations and expectations for their young

adults • Their expectations have significant implications • Check on individual’s sense of satisfaction

The goal is to give persons with I/DD meaningful lives

AAIDD

“ Satisfaction and Sense of Well Being Among Medicaid ICF/MR and HCBS Recipients in Six States” R.J. Stancliffe, K.C. Lakin, S. Taub, G. Chiri & S-y. Byun. Vol 47, Num 2: 63-68. April 2009

• Preference for very small settings • Choice of where and with whom to live with • Sense of loneliness an issue

Interesting Facts

• Up until 10 years ago most adults with severe developmental disabilities in NM were being served by pediatricians

• The ideologies, ethics and philosophy of professionals providing supports influence transition planning

• Employment of persons with ID/DD has been difficult ( the vast majority are unemployed)

What UNM is doing Transition Consultative Clinic opened summer 2010 to offer: • Collaboration between Pediatrics, Family Medicine, Internal

Medicine & Family/Adolescent • A consultative model ( not primary care) • Recommend to start process at age 14 years • Develop Plans of Care • Provide Care Coordination • Ensure Continuity of Care thru adult-based medical care

Examples & differences Person Centered transition planning • Future focused • Personal & medical

independence • Work • Health insurance • Reproductive issues • Privacy & confidentiality • employment

Family Centered planning • Home-based • School-based • Focused on

development

Conclusions In summary: • Transition addresses Continuity • Transition is a deliberate planned process • Start early • Involve youth & family • Set goals and timelines • Develop professional partnerships • Define how you will measure success

Questions & Answers