Transcript Improving Transition Services Through Integrated Services

Improving Transition Services
Through Integrated Services
and Research for Youth with
Chronic Health Conditions
Presented by
Richard N. Roberts, Ph.D.
Early Intervention Research Institute
Utah State University
Logan, UT 84322-6580
(435) 797-1172
[email protected]
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, MN
January 18, 2008
What is Transition All About?
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Universal rite of passage in becoming more
independent and self reliant:
Puberty
Self reliance-health, social, employment
Autonomy
Different circles of friends and contacts
Finding new sources of social and instrumental
support
It’s All About The System!
What is the mandate that
makes this a high priority?
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Survival rate has increased to 90% - particularly in
certain diagnoses
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Legislation frames the mandate for us, for example:
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New Freedom Initiative-promotes full access to community
life for persons with disabilities
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Delivering on the promise HHS report
What Should Transition Look
Like?
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Like everything else- reflect the needs of the
consumer/citizen
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Family centered, youth centered, non punitive
in the transition (waivers, etc.)
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State Title V performance measures developed
through PAR process
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Strong youth involvement speaking their own
voice.
Transition Incentive Awards Findings
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Eleven statewide projects funded under Champions for
Progress.
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 Progress
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Strengthening stakeholder partnerships
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Stakeholders represent target population (client and system)
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Buy in and power sharing by partners
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Allow opportunity for co-learning and capacity building
Developing coordinated plans
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Clear vision based on service needs identified by stakeholders
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Specific operational tasks form plan
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Implementing community-based service system
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Service delivery plan endorsed by stakeholders
Measuring and monitoring progress
Where’s the Policy and
Practice Path?
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Our practice/incentive award/literature review suggests going
back to square one with infrastructure building:
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Team members: PAR in action -working with others; documented
effective programs; infrastructure; consumers integral to the team
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Relationships: shared vision and power; diversity valued; good
relationships with other players
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Organizations: leadership; formalized procedures; effective
communication; sufficient resources; CQI process
PAR 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
Model
Phase I
Phase II
Phase III
Phase IV
Phase V
Develop
Community
Focus/Agree
Upon Outcomes
Collect
Baseline
Data
Action
Plan
Measure
Change
Report
Accomplishments/
agreed upon
outcomes
(Recursive loops suggest the dynamic rather than linear
nature of the plan)
Vertical and Horizontal Integration
Model
Federal
State
Community
Primary
Care
Health
Dept.
Mental
Health
Social
Services
School
District
(Part B)
Family
Coalition Building
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See the community as the unit – not individual programs
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Aim for ecologically valid innovative programs that meet the needs of the
community,
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Recognize the integration and balance of knowledge generation and
intervention ( iterative process)
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Build on the community strengths and resources
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Focused objectives, realistic goals
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Address locally relevant public health problems and multi-determinants of
health
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Equally involve partners in every facet of research process (PAR)
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Allow opportunity for co-learning and capacity building systems
development using cyclical and iterative process
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Disseminate findings or outcomes to all partners
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Engage in project as a long-term process
Pocatello Service Integration Matrix
Service Integration Goal: Coordination of Early Intervention with the Medical Home
Target Population: 0-5 Part C/Part B in CDS or CSHCN Definition Children and Families
Outcomes and Accountability: Referrals from local physicians to early intervention: 16% in 1999; increased to 26% in 2001.
Intensity of Integration Continuum
Informal
No
Connection
Formal
Information Sharing
and Communication
Partners/stakeholders
P
Cooperation and
Coordination
Collaboration
1999
I
Key:
P = Prior to task force
1999 = 1999 SI level
I = Ideal level in 1999
2001 = 2001 SI level
2001
Shared goals/mission statement
Connections b/w task force and
state agencies
I
1999
P
P
2001
I
1999
2001
Community task force governance
and authority
1999
P
Service delivery system/model
Financing and budgeting
Information systems/data
management
1999
P
P
P
1999
1999
2001
I
2001
I
I
I
2001
2001
Consolidation
Integration
Individual/System Outcomes ?
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Improved or sustained health status over time
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Getting the right services and supports at the
right time
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Inclusive settings for health/care/recreation/
education/having friends and supports
What’s Out There for
Assistance?
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HRTW Center
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A very committed constituency who are critical to
the process
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Tools and supports options on all the web pages of
the national centers
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A creative and engaged group of people in
Minnesota
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New legislation and/or grants to support change