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1996-1997 Needs Assessment Project Findings
Project Staff/Participatory Action Team
Research Questions
Conclusions
Project Staff
DHS/Bureau of Health:
Deb Tuck, Linda Schumacher, DeEtte Hall, Tammy Voisine
The University of Maine/Center for Community Inclusion and Disability
Studies:
Liz DePoy, Debbie Gilmer
Participatory Action Team (PAT)
- Project staff
- Adolescents
- Parents
- Health care and social service providers
- Employer
- Educator
- State level policy maker
Research Questions
- What do adolescents with special health care needs, their families, providers, and
policy makers articulate as positive health and transition outcomes?
- How do adolescents with special health care needs, their families, and policy makers
define community independence for this population?
- What current personal and community assets promote the achievement of positive health
and transition outcomes for this population?
- What barriers to promoting the achievement of positive health and transition outcomes
are identified by adolescents with special health care needs, their families, providers,
and policy makers?
- How do geographic and ethnic diversities influence perceptions and experiences?
- What current and needed supports for employment of adolescents with special health care
needs are articulated by employers?
- What service and support needs are identified by adolescents with special health care
needs, their families, providers, employers, and policy makers?
Overarching Themes Articulated by Adolescents
- Adolescents want to feel healthy, enjoy life, "be on their own," "we want
normal lives."
- Some want to go to college while others want to get jobs following high school
- Social institutions are supports as well as barriers (i.e. schools don't allow students
to take narcotics while in school, but without them some can't go to school)
- Parents are supports as well as barriers
- Living in Maine is an asset as well as a barrier
- Technology (e.g. computer networking and e-mail) is an asset
- Some articulate fear and guilt about leaving their parents' homes
Overarching Themes Articulated by Parents
- Adolescents with special health care needs are "as good" as anyone else. They
need to improve their self-esteem
- Many gender, geographic and class issues raised about adolescent needs, barriers to
getting those needs met and desirable outcomes for adolescents (i.e. Medicaid and AFDC
recipients experience discrimination in schools and by health care providers; appearance
begets discrimination; rurality limits access to services, etc.)
- Defining children's independence is equivalent to defining parents independence
- Fear of and ignorance about adolescents with special health care needs exist on the part
of the providers, teachers, employers, community members
- Community needs to provide support for equal opportunity for adolescents
- Service systems are both barriers and assets depending on how services are
conceptualized and delivered (i.e. diversity in school districts and among physicians)
- Communication among systems is essential
- Financial support following termination of school and youth benefits is essential
- Education, esteem and opportunity are needed for employment transition
Overarching Themes Articulated by Transition Coordinators
- Accommodations in all areas of life are essential for adolescents in transition
- "Society should eliminate barriers that make illness a burden"
- Adolescents with special health care needs should have the same choices that all
adolescents have
- Adolescents need education, practice and mentoring
- Communities need awareness, education and skills to support adolescents with special
health care needs.
Overarching Themes Articulated by Educators
- Adolescents need to be aware of their health needs and be responsible in meeting them.
- Adolescents need to advocate for themselves within their communities.
- Ethnicity of adolescent and family often interferes with service acquisition (i.e.
mental health services are not valued in some ethnic communities).
- Health care services need to be coordinated.
- "Emotional and substance use special needs are more difficult to deal with than
other more socially acceptable conditions."
- Rural locations have limited services for adolescents.
Overarching Themes Articulated by Employers
- Employers don't know how to access adolescents with special health care needs.
- Need for education about how to meet the accommodation needs of adolescents with special
health care needs.
- Networking and ongoing training are critical for successful employment.
Families were asked: Which of the following
activities do you feel would be most beneficial to your family?
|
MEAN |
SD |
| Developing a care plan |
4.6 |
1.27 |
| Obtaining financial support |
4.30 |
1.70 |
| Identifying services to fill a care plan |
4.00 |
1.33 |
| Advocacy and information |
3.50 |
2.00 |
| Evaluation of services to ascertain if child's needs are being met |
3.46 |
2.25 |
| Review and evaluation of care plan |
2.80 |
2.04 |
1 = least important
6 = most important
Providers were asked: Which activities do you
feel would be most beneficial to families in your region?
|
MEAN |
SD |
| Developing a care plan? |
4.87 |
1.30 |
| Identifying services to fill a care plan? |
4.13 |
1.69 |
| Obtaining financial support? |
4.71 |
1.33 |
| Advocacy and information? |
2.07 |
1.16 |
| Review and evaluation of care plan? |
2.21 |
1.31 |
| Evaluation of services to ascertain if child's needs are being met? |
3.38 |
1.46 |
1 = least important
6 = most important
Conclusions
Common Themes Across All Groups
- Geographic, ethnic and class diversity affects successful transition
- Financial support is essential
- Equal opportunity
- Rurality limits service availability and access
- Communication in diverse forms among all service systems, adolescents and their families
is essential to successful transition
Differences among groups
- Locus of needed change (i.e. educators place the locus for change within the adolescent,
while transition coordinators position the need for change within the community).
- Differing views of the meaning of independence (i.e. parents view independence for their
children as independence for themselves while other groups equate responsible decision
making with independence, etc.).
- Each group had differing views of the barriers to successful transition (i.e. parents
and transition coordinators viewed systemic barriers, educators viewed adolescent behavior
as a barrier, and adolescents viewed parents, schools and service systems as barriers).
- Each group has differing perspectives on the value of service systems in promoting
health and successful transition.
Degree to which integrated services are available
- Few families had coordination of care
- The areas of coordination that parents saw as most beneficial to their families was
obtaining assistance in developing a care plan, obtaining financial support and
identifying services to meet the care plan
- Areas that were least important were advocacy and evaluation
- While most parents provided coordination of services to their own families, few had any
training in this function.
Implications: Degree to which integrated services
are available
- Services are fragmented and need to be integrated and coordinated
- Adequate financial support needs to be examined and developed for adolescents with
special health care needs
- Adolescents want "normal" life experiences, supporting inclusion as a means to
equal opportunity
- All groups need to communicate. It appears as if the service system, while continuing
parts of what is articulated as needed by parents and adolescents, is not
adolescent-focused. Inclusive opportunities need to be integrated into the compliment of
supports for adolescents with special health care needs
- Developing a coordinated system of care and educating parents and providers to act as
care coordinators are two elements that are critically needed if the community and its
services system are to be responsive to adolescents and their families.
Each group had divergent interests
- Adolescents wanted "normalcy and opportunity"
- Parents wanted opportunity, empowerment, and financial security for their children
- Providers saw the essential need for an adequate and coordinated service infrastructure
- Educators felt that adolescents should be as responsible for themselves as possible
- Employers wanted information and support from providers.
Each group had some common needs
- Integrated service system
- Sufficient information about access and available services
- Adequate health insurance
- Housing opportunities
Desired Health & Transition Outcomes: Special
Educators
- Adolescents should be responsible for themselves and their choices
- Self control and full personal responsibility for planning and enacting life plans
- Independence from parents
Desired Health & Transition Outcomes: Providers
- Awareness and empowerment
- Adolescents should be educated to be knowledgeable about their conditions and to
advocate on their own behalf
- A formal transition plan to independent living and employment should be written
Desired Health & Transition Outcomes: Parents
- Full range of educational and employment opportunities
- Educated, empowered adolescents
- Full range of living options for all levels of independence
- Successful transition from home to independence
- Capacity to manage health insurance
Desired Health & Transition Outcomes:
Adolescents
- Full range of opportunity
- Being heard about their own needs
- Normal social-sexual function
Service and Support Needs
- safety net-parents and providers
- adjustment period following HS-adolescents
- data and information-providers
- housing options-adolescents and parents
- transportation-adolescents
- adequate insurance-all
- socialization and recreation opportunities-adolescents
- voc rehab-educators, providers
Barriers
- Services are related to label and school attendance-adolescents
- Lack of safety-parents
- Insurance and service system-all
- The adolescents themselves-educators and providers
Supported in part by project MCJ-23HRW1 from the Maternal and Child
Health Bureau (Title V, Social Security Act), Health Resources and Services
Administration, Department of Health and Human Services.
This is an official publication of The University of
Maine
A member of the University of Maine System
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Updated: 10/10/2007
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