|
Agency Specific Recommendations
Group
= Access: From Pediatric to Adult Health Care
Back to Table of Contents
|
General
Discussion: Suggestions & Recommendations
|
Assure that service
providers adopt the principles and practices outlined in
the federal mandate of OBRA '89. This legislation states,
Title V CSHCN Programs were given a responsibility to
facilitate the provision of family-centered,
community-based coordinated care, including
care-coordination for children with special health care
needs, including SSI child beneficiaries.
Additional MCHB guidance also requires cultural
competency as a service system component and as a
component of family centered care. Therefore, a key part
of these assurance efforts ought to be the use of existing
definitions of cultural competency and tools to measure
service-based cultural competence, adapting them when
necessary. How this form of competence is linked to the
practice of family-centered, community-based service and
coordinated/collaborative care, must also be addressed.
Understanding and addressing cultural competence, which
is mandated through State Title V Block Grant Performance
Measures, and MCHB/DSCSHCN discretionary grant guidances
is difficult but achievable if it is uniformly and
periodically supported and assessed (using well validated
methods). Everyone must understand that assurance efforts
leading to the adoption the intended practices of OBRA
'89 is a continual, long-term process.
Ensure that each
individual has a primary care physician who provides a
coordinated, affordable, and streamlined comprehensive
care program. This program should embrace the
“family-centered, community-based and culturally
competent” principles that are a part of Title V
CSHCN program and policy initiatives.
|
| HRSA/MCHB |
Create
a Title V equivalent for adults. Rather than create
a separate federal agency that handles this, expand the
scope of Title V to encompass responsibility for
promoting family-centered, community-based, coordinated
care for all. |
| Other Federal Agencies |
HCFA
Create a uniform
benefit package for all individuals with chronic
illnesses and disabilities across states. A
specific “needs” assessment or test should be
developed to determine eligibility for this benefits
package. This would help ensure that people with
chronic illnesses and disabilities not lose essential
health and support services or have to pay for such
services out-of-pocket because of the high costs of
caring for their conditions.
|
| PTFEAD |
N/A |
| HRTW Interagency Workgroup |
Develop
a unified knowledge base about individuals with chronic
illnesses and disabilities that would include a life-span
perspective. |
| Other |
N/A |
| Agency Specific
Recommendations
Group = Partnerships for
Successful Outcomes: Family, Youth &
Professional
Back to Table of Contents
|
General
Discussion: Suggestions & Recommendations
|
Develop
comprehensive research agenda, develop quality assurance
measures, and implement practice guidelines based on
those measures.
Promulgate research
findings about people with disabilities in general.
Identify and
describe the family practice literature that is relevant
to the topic of the care of children, adolescents and
young adults with chronic conditions. Establish
ongoing dialogue between pediatricians and family
medicine regarding the transition process. Dialogue
should take place at the professional (practice) and the
training (residency) levels.
|
| HRSA/MCHB |
Cross-train
professionals across disciplines and sectors such as
social service sectors and medical sectors. |
| Other Federal Agencies |
SSA
Develop appropriate
quality measures and practice guidelines for transition.
Start by examining Social Security’s definition of
“disability.” Implement state-level,
outcome-based research on what is actually working for
people with disabilities and professionals.
HCFA
Implement
consumer-directed personal assistance so that services
and activities for an individual could be more spread
out.
Dept. of ED/OSERS
Develop more Independent Living
Centers (ILCs). ILCs promote self-advocacy and
encourage society to develop relationships with people
with disabilities.
|
| PTFEAD |
N/A |
| HRTW Interagency Workgroup |
N/A |
| Other |
N/A |
| Agency Specific
Recommendations
Group = Coordination:
Sustaining Quality Health Care
Back to Table of Contents
|
General
Discussion: Suggestions & Recommendations
|
Implement
the idea of “youth-centered” care. Incorporate
youth into the planning process, especially when
developing state plans on transition. Encourage more
agencies and organizations, such as the American Academy
of Pediatrics, American Academy of Family Practitioners,
Parent Training Centers, and Family Voices to develop
broader state plans that focus more on transition issues.
Overall, states need a blueprint from which to develop
their state plans -- a blueprint that includes mental
health programs and issues.
Encourage tertiary health
care facilities to interface better with young people
with chronic illnesses and disabilities so they are
enabled and ready for work.
Increase public awareness
about the seriousness of transition issues. Who are the
youths in transition? What are their successes and their
barriers?
|
| HRSA/MCHB |
Provide
guidance to state Title V Programs to promote their
participation in developing the health component of the
Individual Education Plan (IEP). |
| Other Federal Agencies |
HCFA
Support a redesigning of the
Medicaid system to make it more of a general support
model.
Dept. of ED/OSERS
Enhance the health component of
the Individual Education Plan (IEP).
|
| PTFEAD |
Create
a stronger, consumer- and youth-driven interagency
collaboration around transition issues, including
performance evaluation.
Support a redesigning of
the Medicaid system to make it more of a general support
model.
|
| HRTW Interagency Workgroup |
Create
a stronger, consumer- and youth-driven interagency
collaboration around transition issues, including
performance evaluation. |
| Other |
N/A |
|
Agency Specific Recommendations
Group
= Financing: Bridging the Funding Streams of Health Care
Back to Table of Contents
|
General
Discussion: Suggestions & Recommendations
|
Educate
policy makers about systems in place that do not work for
certain segments of the disabled population. Educate
employers, families and youths about transition issues
and their roles and responsibilities.
Implement a state-level
needs assessment. Define the population of
adolescents and youth with SHCN in terms of from where,
whom and what systems they are receiving services. Answer
the question, “What is an ‘effective’
transition?” States need to know how many youth with
disabilities are employed as well as barriers to their
employment.
Encourage states to fully
implement the Medicaid option for extended coverage.
Coverage for personal-care assistants should be available
within Medicaid and should also be available through
private coverage. Address the incentives to leave
SSI and Medicaid.
|
| HRSA/MCHB |
Develop
a broad database that addresses transition issues. Develop
a Title V Block Grant performance measure on transition
and include the issue of transition in the Title V needs
assessment.
Introduce a type of Title
V for adults that is not focused on an entitlement for
health care coverage.
|
| Other Federal Agencies |
N/A |
| PTFEAD |
Mandate
linkages in federal laws for different systems so that
the issue of transition becomes a focal point around
which to work. |
| HRTW Interagency Workgroup |
N/A |
| Other |
N/A |
|
Meeting Participants' Personal
Commitments
General Follow-Up Action
Commitments & Future Objectives
Back to Table of Contents
|
Physicians
Pediatricians, Internists
Family Practitioners,
& Geneticists
|
Encourage
MCHB to fund the development of policy papers on
successful transition from the pediatric to adult health
care system written from the medical, family, and youth
perspectives.
Encourage MCHB to update
their initiatives to include youth and transition in
health care issues.
|
Youth with
Disabilities,
Adults with Disabilities,
Family Leaders,
Advocates
|
Encourage
expanding dialogue in MCHB-supported electronic mailing
lists to include youth transition issues.
Promote
the creation of a federal initiative for youth-centered
care.
Encourage
expanding dialogue in MCHB-supported electronic mailing
lists to include youth transition issues.
|
Nurses, School Nurses, Therapists,
Social Workers, Nutritionists
|
Develop
health care goals and objectives for yearly review on IEP
(Individual Healthcare Plan). |
Vocational Educators, General
Educators, Employment Specialist, Employers
|
N/A |
Other: Academia, Federal
Employees, HRTW Projects, Researchers,
Private Funding
Agency
|
Develop
a website devoted to linking resource materials and
highlighting exemplary models of transition from
pediatric to adult health care.
Convene a federal
workgroup to provide annual targeted technical assistance
in incorporating successful strategies for assuring a
continuity of quality health care.
Develop a
website devoted to linking resource materials and
highlighting exemplary models of transition from
pediatric to adult health care.
|
|
Meeting Participants' Personal
Commitments
State/National Federal Level
Back to Table of Contents
|
Physicians
Pediatricians, Internists
Family Practitioners,
& Geneticists
|
Ensure
at the state level that each individual has a primary
care physician who provides coordinated, streamlined, and
affordable comprehensive care.
Persuade Health
Commissioner to provide leadership to Medical Society
& Hospital Association to conduct statewide MD survey
on transition.
|
Youth with
Disabilities,
Adults with Disabilities,
Family Leaders,
Advocates
|
Increase
awareness of which state level agencies/programs are
addressing transition.
Bring transition issues
to the Governor's Office.
|
Nurses, School Nurses, Therapists,
Social Workers, Nutritionists
|
Work
with Student Support Project (interdisciplinary task
force for school nurses, psychologists, social workers,
guidance counselors) to identify/promote awareness of
issues. |
Vocational Educators,
General Educators, Employment Specialist, Employers
|
Expand
the number of youths with SHCN served through interagency
transition teams.
Bring transition issues
to the Governor's Office.
|
Other: Academia, Federal
Employees, HRTW Projects, Researchers,
Private Funding
Agency
|
Ensure
that state demonstration projects examining health
barriers to employment for people with disabilities are
focused not only on adults but also on adolescents who
want to work. |
| Meeting
Participants' Personal Commitments
Interagency
Collaboration
Back to Table of Contents
|
Physicians
Pediatricians, Internists
Family Practitioners,
& Geneticists
|
Have
the American Academy of Family Practitioners’ (AAFP)
Committee on Public Health research transition issues.
Raise level of transition (from
pediatric to adult health care) activity at Association
of Maternal and Child Health Programs.
Increase American Academy of
Pediatrics’ (AAP) Medical Home Project Transition
Training content. Design an AAP insert on transition.
|
Youth with
Disabilities,
Adults with Disabilities,
Family Leaders,
Advocates
|
N/A |
Nurses, School Nurses, Therapists,
Social Workers, Nutritionists
|
Add
adult issues to strategic plan of the Department of
Public Health.
Develop a lifespan care
coordination model with Department of Human Services.
|
Vocational Educators,
General Educators, Employment Specialist, Employers
|
Convene
a Work Improvement Panel to advise the Governor and the
Directors of Human Services, Education, Workforce
Development, Economic Development & Public Health on
the employment of youths with disabilities participating
in government programs.
Disseminate Society of
Teachers of Family Medicine (STFM) national meeting
information on disabilities.
|
Other: Academia, Federal
Employees, HRTW Projects, Researchers,
Private Funding
Agency
|
N/A |
|
Meeting Participants' Personal
Commitments
Research & Data Gathering
Back to Table of Contents
|
Physicians
Pediatricians, Internists
Family Practitioners,
& Geneticists
|
Research
and identify health-related issues with concern to young
adults transitioning into the workplace, adult health
care and school. |
Youth with
Disabilities,
Adults with Disabilities,
Family Leaders,
Advocates
|
Obtain
data and literature on basic clinical problems on
individuals with special needs.
Develop a database of
resources that people can use for referrals for support
services [in recreation, employment, health (behavioral,
medical), and education].
|
Nurses, School Nurses, Therapists,
Social Workers, Nutritionists
|
Research
and identify health-related issues with concern to young
adults transitioning into the workplace, adult health
care and school. |
Vocational Educators,
General Educators, Employment Specialist, Employers
|
Plan
to strategize with ILCs and others in the disability
industry to compile information relevant to youth and
health care. Make information known to Institute
for Child Health Policy and the Maternal and Child Health
Bureau for external dissemination. |
Other: Academia, Federal
Employees, HRTW Projects, Researchers,
Private Funding
Agency
|
Obtain
evidence-based data on models, utilization, demographics,
epidemiology, and characteristics of patients.
Develop
local databases for personal care attendants, respite
care, etc. Databases should be printed and kept
online. A pilot project in Massachusetts is being
done for pediatricians.
|
| Meeting
Participants' Personal Commitments
Professional
Development & Training
Back to Table of Contents
|
Physicians
Pediatricians, Internists
Family Practitioners,
& Geneticists
|
Bring
the issues of education and job opportunities (or lack
thereof) into the discussion of transition in medical
training. These are key factors that influence access to
health care after the transition between pediatric and
adult settings.
Integrate transition
issues into interdisciplinary health professional classes
(short term).
Expand
"disabilities" teaching to undergrad medical
students by offering a weekly session in our Physical
Diagnosis Clinic.
Integrate
training of residents in pediatric and family practice at
Community Hospitals in terms of chronic illnesses across
the life span.
Submit for funding a
grant proposal to develop a curriculum for physicians,
young adults, family members, and other health care
professionals that relates to the transition from
pediatric to adult health care systems.
Suggest to local
universities that curricula include psychosocial issues
related to disability and youth.
Develop a curriculum plan
for a website to provide transition training for
practicing physicians.
Develop certificate
programs for special interest and expertise in various
areas.
Educate
interdisciplinary faculty and LEAH trainees on the
themes, directions and issues of the Transition
Revolution.
|
Youth with
Disabilities,
Adults with Disabilities,
Family Leaders,
Advocates
|
N/A |
Nurses, School Nurses, Therapists,
Social Workers, Nutritionists
|
Continue
to work on the integration of "health related"
transition with "education" and
"work" issues through policy (advocacy) and
training efforts.
Complete a booklet for
MDs, Nurse Practitioners, and School Nurses in the areas
of health, education, employment and recreation.
Include resources.
|
Vocational Educators,
General Educators, Employment Specialist, Employers
|
N/A |
Other: Academia, Federal
Employees, HRTW Projects, Researchers,
Private Funding
Agency
|
Bring
the issues of education and job opportunities (or lack
thereof) into the discussion of transition in medical
training. These are key factors that influence access to
health care after the transition between pediatric and
adult settings.
Make alterations to
medical training to foster respect between
providers. Mentor students and residents in areas
of disability and chronic conditions.
|
|
Meeting Participants' Personal
Commitments
Create or Enhance Local
Projects and Developments
Back to Table of Contents
|
Physicians
Pediatricians, Internists
Family Practitioners,
& Geneticists
|
Create
a center at Children's Hospitals that provide
comprehensive voc-ed and other transition education to
patients/people with disabilities.
Develop pilot programs
wherein physicians are working together in the same cases (Peds, Family Practitioners, Internal Medicine) to
facilitate collaboration.
Implement
University Medical Center needs assessment with
family/young adult input.
|
Youth with
Disabilities,
Adults with Disabilities,
Family Leaders,
Advocates
|
Examine
how subspecialties in pediatric hospitals are assisting
their patient populations to transition to the adult
setting, thereby creating an awareness of a commitment to
addressing this issue.
Use the Independent
Living Centers more for transition issues. Also refer
parents to ILCs for training their young adults on
advocacy skills and employment issues.
|
Nurses, School Nurses, Therapists,
Social Workers, Nutritionists
|
Request
position statement from National Association of School
Nurses (NASN) for acknowledgement by all affiliate state
organizations.
Duplicate this meeting at
the local level with county stakeholders. Involve all
agencies and programs.
Develop a
community-based project in service-learning to help
health professions students learn about these issues
first-hand (long term).
|
Vocational Educators,
General Educators, Employment Specialist, Employers
|
Create
a center at Children's Hospital in Cincinnati that brings
together Project SEARCH and rehab services to provide
comprehensive voc-ed and other transition education to
patients/people with disabilities. |
Other: Academia, Federal
Employees, HRTW Projects, Researchers,
Private Funding
Agency
|
Implement
local Children's Hospital needs assessment with
family/young adult input regarding transition readiness
needs for health care and employment. |
| Meeting
Participants' Personal Commitments
Information and
Empowerment Outreach
Back to Table of Contents
|
Physicians
Pediatricians, Internists
Family Practitioners,
& Geneticists
|
N/A |
Youth with
Disabilities,
Adults with Disabilities,
Family Leaders,
Advocates
|
Increase
opportunities for youths with disabilities to be involved
in planning and implementing health promotion/education
activities regarding transition and health care. |
Nurses, School Nurses, Therapists,
Social Workers, Nutritionists
|
Design
and develop educational and informational multi-media
materials articulating transition health-related issues. |
Vocational Educators,
General Educators, Employment Specialist, Employers
|
Develop
fact sheets with tips for successful transition in health
care for teens and families and put in on the WWW.
Conduct
workshops for families and young adults on
record-keeping. Discuss how to do it, forms that
simplify it, and how it can empower youth in transition
to assume responsibility for their own health care.
|
Other: Academia, Federal
Employees, HRTW Projects, Researchers,
Private Funding
Agency
|
Produce
“Healthy and Ready to Work: The Health
Connection” video; a work incentives video for SSA;
and develop and post transition materials to the Go to
Work and Transition Revolution web-sites.
Develop communication
tools to disseminate to the field outcomes data on
increasing access to/retention of health care.
Identify, catalogue,
review, and make information available about training and
program-development activities related to transition from
pediatric to adult health care systems that are being
carried out in Pediatric Residency Programs; Family
Practice Residency Programs; Med/Peds Residency Programs;
Internal Medicine Residency Programs; University
Affiliated Programs (supported by MCHB and/or
Administration on Developmental Disabilities); AAP,
American Academy Family Practitioners, state Title V
CSHCN Programs; and other health care and
managed care organizations.
|
|
Meeting Participants' Personal
Commitments
Funding
Back to Table of Contents
|
Physicians
Pediatricians, Internists
Family Practitioners,
& Geneticists
|
N/A |
Youth with
Disabilities,
Adults with Disabilities,
Family Leaders,
Advocates
|
N/A |
Nurses, School Nurses, Therapists,
Social Workers, Nutritionists
|
Encourage
professional organizations to provide grant incentives to
develop/pursue avenues of transition which may be used by
health care providers.
|
Vocational Educators,
General Educators, Employment Specialist, Employers
|
N/A |
Other: Academia, Federal
Employees, HRTW Projects, Researchers,
Private Funding
Agency
|
Convene
a workgroup to discuss and identify strategies to remove
barriers from blending funding streams. |
|
Meeting Participants' Personal
Commitments
Journal/Publication Materials
Back to Table of Contents
|
Physicians
Pediatricians, Internists
Family Practitioners,
& Geneticists
|
Write
a joint association paper for publication in American
Family Physicians.
Communicate among
professionals about youth with disabilities in the Journal
of Family Practice to promote “youth-centered
care.”
|
Youth with
Disabilities,
Adults with Disabilities,
Family Leaders,
Advocates
|
N/A |
Nurses, School Nurses, Therapists,
Social Workers, Nutritionists
|
N/A |
Vocational Educators,
General Educators, Employment Specialist, Employers
|
N/A |
Other: Academia, Federal
Employees, HRTW Projects, Researchers,
Private Funding
Agency
|
N/A |
| Meeting
Participants' Personal Commitments
Innovative
Ideas
Back to Table of Contents
|
Physicians
Pediatricians, Internists
Family Practitioners,
& Geneticists
|
Encourage
retired doctors to give their time to help see expensive
(in time) patients. |
Youth with
Disabilities,
Adults with Disabilities,
Family Leaders,
Advocates
|
N/A |
Nurses, School Nurses, Therapists,
Social Workers, Nutritionists
|
Enlist
professional state organizations to develop/implement goals
in targeting special needs individuals to assist in
developing avenues for appropriate health services. |
Vocational Educators,
General Educators, Employment Specialist, Employers
|
N/A |
Other: Academia, Federal
Employees, HRTW Projects, Researchers,
Private Funding
Agency
|
N/A |
