Transcript Office for Genetics and Children with Special Health Care

Office for Genetics and Children
with Special Health Care Needs
Presented By:
Donna X. Harris, Acting Director
Debbie Badawi, Medical Director
February 23, 2011
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Departure of long-standing
Director of the OGCSHCN, and
other key vacancies
Dr. Russell Moy, Director of the
Family Health Administration felt
the OGCSHCN would benefit from
a comprehensive organizational
assessment before key decisions
regarding the future work of the
OGCSHCN were made.
Transition Workgroup
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Advise the Director of FHA regarding the
future work and next best steps for
programs within the OGCSHCN.
A transition work group was appointed and
consisted of representatives from the
Laboratories Administration, the Center for
Maternal and Child Health, Local Health
Departments, parent organizations, the
American Academy of Pediatrics, Genetics
Centers of Excellence, and OGCSHCN
leadership team
1)
Improve data systems to enable
sharing among strategic partners in
order to identify families for
education/services; to identify all
resources necessary for families;
and to evaluate the effectiveness of
programs by measuring outcomes.
This data may also be used for
clinical and policy research.
Workgroup Recommendations
2)
Support the establishment of medical
homes to provide comprehensive,
continuous, coordinated and culturally
sensitive care to CYSCHN in Maryland
in collaboration with their families.
This includes a gradual transfer of
care to the youth when possible and a
planned transition to adult services.
3)
Community based systems of care
need to be created in a thoughtful way
that minimizes duplication of services.
This includes taking a leadership role in
educating multidisciplinary providers
and establishing standards for and
levels of care coordination and respite
care.
Workgroup Recommendations
4)Specialty care and related services
need to be accessible in a practical
way to CYSHCN. This involves
educating primary care and
emergency room physicians, creating
standards of communication among
providers, and supporting outreach
clinics or improved transportation for
families.
5)
Continued financial safety net services
are essential.
6)
Continued population based screening
efforts with follow up to establish ongoing
medical care and early intervention
services.
7)
The OGCSHCN must publicize its
expanded role and availability to families
and providers of CYSHCN.
Accomplishments
in Past Six Months
Caring and Committed Staff
Making A Difference
Organizational Changes
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Assessment of staff job functions and
program needs and realign staff based on
skills and needs
7 vacant positions filled: Associate Medical
Director, Infant Hearing Program Chief,
Birth Defects System and Reporting
Program Chief, Health Policy Analyst II,
Community Systems Coordinator, Research
Student Intern, and Youth Transition
Coordinator.
Data and Reporting Systems
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Assessment of program data needs and
established systems
Tracking system for grantee program
and fiscal reports initiated
Developing a single data system to hold
all infant follow-up data
Establishing links with Vital Statistics
and MSDE to get needed data to
evaluate outcomes.
Data System
Statewide CYSHCN Voluntary Registry
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Reaching out to local health
departments, governmental agencies,
Neonatal Intensive Care Units, specialty
clinics, parent organizations, and
advocacy organizations to develop a
voluntary registry of families with
special needs children to provide agespecific and disease specific resource
and referral information.
Move Away From
Direct Clinical Services
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Model for a statewide infant follow-up
program developed where children are
identified through screening, followed until
diagnosis is made and referred for ongoing
medical care, early intervention and
needed support services
Researching alternatives for redirecting
current metabolic nutrition direct care
services
Move Away From
Direct Clinical Services
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CYSHCN resource database developed for
families and providers
Populating resource database with
information from various sources
Promoting and publicizing Children’s
Resource Line to assist families in
identifying needed services
Meet Statutory Requirements: Birth
Defects Reporting and Information
System
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First time in 4 years BDRIS program is in
compliance with law.
Families began to receive parent
education letters and birth defect fact
sheets with resources cited as of 02/01/11
Critical linkage established with Vital
Statistics Administration to obtain birth,
death and hospital compliance data
Established Advisory committee that is
diverse
Revamp Sickle Cell Disease
Program
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Program protocols and procedures for follow-up
care modernized to increase efficiency
Redesigned physician evaluation to capture
relevant information for follow-up care
Developed parent education letter to send to
families with educational packets
Created physician education letter on expected
care for children with SCD
Expand Leadership Role to Families and
Providers of CSHCN, Professional and
Governmental Organizations
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Re-established leadership role in the
Maryland’s Consortium of Care Coalition.
Partnering with Parent’s Place, MSDE,
VSA and other agencies (DDA, DHR,
MCO’s) to identify opportunities to
collaborate on youth to adult medical
transition issues
Expand Leadership Role to Families and
Providers of CSHCN, Professional and
Governmental Organizations
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Developing partnerships for collaborating
on a medical home initiatives.
Met with all LHD’s Special Needs
Coordinators to discuss future direction of
program
Re-established leadership role in the
Maryland’s Statewide Services for Adults
with Sickle Cell Disease
Increase Access to Specialty Care
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Met with LHD’s and providers of
complex care patients to assess
specialist/related service provider
needs
Developed IMPACT Initiative (Improving Medical Home
Partnerships for Specialty Access
through Coordination and Training ) improve the quality of the medical
home and the practitioners’ ability to
manage common specialty concerns
Increase Access to Specialty Care
IMPACT Initiative
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Pediatric subspecialty modules for management
of common problems developed for primary care
providers.
Post on web-based learning site (Blackboard).
Collaborative Care agreement for specialists and
primary care providers developed.
Next step will be implementation and evaluation
– incorporate into MHCC PCMH initiative.
Organizational Change
Allocation of Resources
Funding Priorities
Allocation of Resources
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To accomplish our future goals for
improved access and to establish standards
for coordination of care, grantees will need
to align their programs to work towards
these goals
Need to expand its funding base by
applying for grants
New Process for Evaluating
Grant Proposals
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Grant review committee to be assembled.
Scoring tabulated by members based on
alignment with office priorities.
Fund distribution based on score.
Funding Priorities
for Local Health Departments
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Assessment and development of regional
resources for CSHCN, including access to
specialty care.
Medical home development through strategies
such as public education regarding the nature
and benefits of a medical home; identification
of medical homes in the community; and
encouraging development of medical
neighborhoods in which a network of primary
and specialty providers can collaborate more
effectively for patient care.
Funding Priorities
for Local Health Departments
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Support for medical home providers and
families in accessing resources including
clinical services, financial assistance and
respite.
Transition of youth to adult health care,
including efforts to partner with local school
system.
Provide training on family-professional
partnerships and cultural competency for
medical and related service providers in the
community.
Funding Priorities for Local Health
Departments
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Nursing care coordination where
medical homes are not yet able to
accomplish this goal.
Enabling services such as
transportation and interpreting
services.
Funding Priorities for Center of
Excellence, Genetic Centers, Parent
Organizations
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Medical home development through
strategies such as public education
regarding the nature and benefits of a
medical home; identification of medical
homes in the community; and encouraging
development of medical neighborhoods in
which a network of primary and specialty
providers can collaborate more effectively
for patient care.
Funding Priorities for Center of
Excellence, Genetic Centers, Parent
Organizations
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Support for medical home providers and
families in improving coordination of care
among health care providers, educational
programs, and community resources.
Transition of youth to adult health care,
including efforts to partner with local
school systems.
Funding Priorities for Center of
Excellence, Genetic Centers, Parent
Organizations
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Improvements in family-professional partnerships and
cultural competency for medical and related service
providers in the community. This includes family member
education or training for advocacy roles.
Improving access to specialty care. This includes
outreach specialty clinics, shortened clinic waiting lists and
laboratory services.
Provision of enabling services to support families of
CSHCN, including medical day care, respite services or
assistance with transportation.
Mission
The Office for Genetics and Children
with Special Health Care Needs’
mission is to assure a comprehensive,
coordinated, and consumer-friendly
system of care that meets the needs
of Maryland’s children and youth with
special health care needs and their
families.
Vision
The Office for Genetics and Children with
Special Health Care Needs is a nationally
recognized leader in developing the
unique potential of each Maryland child
and young person served through its
comprehensive, fully integrated and
consumer-friendly system of care.