Improving Transition Services Improving Transition Services Through Integrated Services and Through Integrated Services and Research for Youth with Chronic Research for Youth with Chronic

Health ConditionsHealth ConditionsPresented by

Richard N. Roberts, Ph.D.Early Intervention Research Institute

Utah State UniversityLogan, UT 84322-6580

(435) 797-1172richard.roberts@usu.edu

Paper presented at the

Invitational Transition Conference 2008: Building an Interdisciplinary Research Agenda to Enhance Quality of Life and Transition to Adulthood for Youth with Chronic Health Conditions

Minneapolis, MNJanuary 18, 2008

Invitational Transition Conference 2008Building an Interdisciplinary Research Agenda to Enhance Quality of Life and Transition to Adulthood for Youth with Chronic Health Conditions

January 18, 2008

Speaker Richard N. Roberts, PhDProfessor, PsychologyDirector, Early Intervention Research Institute andNational Center for Special Health Care Needs (Champions, Inc.)Utah State University

Sponsors:University of Minnesota School of Nursing, Center for Children with Special Healthcare NeedsMinnesota Department of Health – Minnesota Children with Special Health Needs

Co-sponsors:Department of Pediatrics, University of Minnesota Medical SchoolMaternal & Child Health, University of Minnesota School of Public HealthThe Institute on Community Integration, University of MN College of Education and Human Development

What is Transition All About?What is Transition All About?

Universal rite of passage in becoming more Universal rite of passage in becoming more independent and self reliant:independent and self reliant:

PubertyPuberty Self reliance-health, social, employmentSelf reliance-health, social, employment AutonomyAutonomy Different circles of friends and contactsDifferent circles of friends and contacts Finding new sources of social and instrumental Finding new sources of social and instrumental

supportsupport

It’s All About The System!It’s All About The System!

What is the mandate that What is the mandate that makes this a high priority? makes this a high priority?

Survival rate has increased to 90% - particularly in Survival rate has increased to 90% - particularly in certain diagnosescertain diagnoses

Legislation frames the mandate for us, for example:Legislation frames the mandate for us, for example:

New Freedom Initiative-promotes full access to community New Freedom Initiative-promotes full access to community life for persons with disabilitieslife for persons with disabilities

Delivering on the promise HHS reportDelivering on the promise HHS report

What Should Transition Look What Should Transition Look Like?Like?

Like everything else- reflect the needs of the Like everything else- reflect the needs of the consumer/citizenconsumer/citizen

Family centered, youth centered, non punitive Family centered, youth centered, non punitive in the transition (waivers, etc.)in the transition (waivers, etc.)

State Title V performance measures developed State Title V performance measures developed through PAR processthrough PAR process

Strong youth involvement speaking their own Strong youth involvement speaking their own voice. voice.

Transition Incentive Awards FindingsTransition Incentive Awards Findings Eleven statewide projects funded under Champions for Eleven statewide projects funded under Champions for

ProgressProgress. .

Findings:

1. Transition is a process, not an event

2. CYSHCN have little or no experience managing their own health care,

3. Disconnect between Youth and adult expectations of education and employment opportunities,

4. Youth with SHCN want to be considered like any young adult without special health care needs;

5. Families tend to be unaware of programs and resources that could help;

6. Pediatric and adult health care professionals have little experience to communicate and collaborate and do not know the other system parts

7. Systems level coordination between the health care system, education, rehabilitation or insurance systems is very problematic .

8. Moving from entitlement to eligibility ( ICD-9 codes /health to voc rehab)

Champions for ProgressChampions for Progress Strengthening stakeholder partnerships

Stakeholders represent target population (client and system)

Buy in and power sharing by partners

Allow opportunity for co-learning and capacity building

Developing coordinated plans Clear vision based on service needs identified by stakeholders

Specific operational tasks form plan

• Implementing community-based service system Service delivery plan endorsed by stakeholders

Measuring and monitoring progress

Where’s the Policy and Where’s the Policy and Practice Path?Practice Path?

Our practice/incentive award/literature review suggests going back to square one with infrastructure building:

Team members: PAR in action -working with others; documented effective programs; infrastructure; consumers integral to the team

Relationships: shared vision and power; diversity valued; good relationships with other players

Organizations: leadership; formalized procedures; effective communication; sufficient resources; CQI process

PAR as the FrameworkPAR as the Framework

Participatory Action Research (PAR) is an

approach that encourages researchers and those

who will benefit from the research (families,

providers, policymakers) to work together as full

partners in all phases of the research.

Continuous Quality Improvement Continuous Quality Improvement ModelModel

Phase I

Develop Community

Focus/Agree Upon Outcomes

Phase V

Report Accomplishments/

agreed upon outcomes

Phase II

Collect Baseline

Data

Phase III

Action Plan

Phase IV

Measure Change

(Recursive loops suggest the dynamic rather than linear nature of the plan)

Vertical and Horizontal Integration Vertical and Horizontal Integration ModelModel

Federal

State

Family

Primary Care

Health Dept.

Mental Health

Social Services

School District

(Part B)

Community

Coalition BuildingCoalition Building See the community as the unit – not individual programs Aim for ecologically valid innovative programs that meet the needs of the

community, Recognize the integration and balance of knowledge generation and

intervention ( iterative process) Build on the community strengths and resources Focused objectives, realistic goals Address locally relevant public health problems and multi-determinants

of health Equally involve partners in every facet of research process (PAR) Allow opportunity for co-learning and capacity building systems

development using cyclical and iterative process Disseminate findings or outcomes to all partners Engage in project as a long-term process

Partners/stakeholders

Shared goals/mission statement

Connections b/w task force andstate agencies

Community task force governanceand authority

Service delivery system/model

Financing and budgeting

Information systems/data management

No Connection

Information Sharingand Communication

Cooperation andCoordination Collaboration Consolidation Integration

Informal Formal

Intensity of Integration Continuum

P

P

P

P

P

P

Key:P = Prior to task force

P

Pocatello Service Integration Matrix Service Integration Goal: Coordination of Early Intervention with the Medical HomeTarget Population: 0-5 Part C/Part B in CDS or CSHCN Definition Children and FamiliesOutcomes and Accountability: Referrals from local physicians to early intervention: 16% in 1999;

1999

1999

1999

1999

1999

1999

1999

1999 = 1999 SI level

increased to 26% in 2001.

I

I

I

I = Ideal level in 1999

I

I

I

I

2001

2001 = 2001 SI level

2001

2001

2001

2001

2001

2001

Individual/System Outcomes ?Individual/System Outcomes ? Improved or sustained health status over time

Getting the right services and supports at the right time

Inclusive settings for health/care/recreation/ education/having friends and supports

What’s Out There for What’s Out There for Assistance?Assistance?

HRTW CenterHRTW Center

A very committed constituency who are critical to A very committed constituency who are critical to the process the process

Tools and supports options on all the web pages of Tools and supports options on all the web pages of the national centersthe national centers

A creative and engaged group of people in A creative and engaged group of people in Minnesota Minnesota

New legislation and/or grants to support change New legislation and/or grants to support change