Climbing Mountains to Increase Diagnostic Capacity in State Systems Floridas Experience

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Climbing Mountains to Increase Diagnostic
Capacity in State Systems Floridas Experience

• Kathryn Shea, LCSW
• COO, Fl Center for Child and Family Development
• Sarasota, FL
• kathryn.shea_at_thefloridacenter.org
• www.thefloridacenter.org

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Building State FASD Diagnostic Capacity

• Laying the Foundation
• State FASD Inter-agency Action Group developed in
  Fall 2000
• Co-Founders
• DOH, Maternal and Child Health Office
• DCF, Substance Abuse Program Office Family
  Safety Program Office
• Holds regularly scheduled meetings
• Membership includes representation from families
  effected by FASD and various stakeholder agencies.

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Building State FASD Diagnostic Capacity

• Floridas FASD State Strategic Plan
• Level 1 Prevention
• Level 2 Diagnosis and Assessment
• Level 3 Intervention
• Level 4 Life Support/Extended Services

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Building State FASD Diagnostic Capacity

• 2002 - FASD Center for Excellence Town Hall
  Meeting held in Clearwater, FL
• January, 2004 - Presented before Gov.s Drug
  Policy Council Dir. of Govs Office on Drug
  Control Policy became a huge supporter
• May, 2004 - Invited to speak at Florida Drug
  Summit
• Governor and Cabinet were present
• Showed slide of brain with FAS vs. normal
• Showed video of Seth (Value of personal story)

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Building State FASD Diagnostic Capacity

• The Florida Center funded a team of five
  interdisciplinary staff to attend a 2 day
  training in Seattle, WA on the FASD 4 Digit
  Diagnostic Code developed by University of
  Washington FAS DPN (Diagnostic Prevention
  Network) staff
• Wrote Community Budget Issue Request (CBIR)
  October, 2004 for 280,000 to develop Floridas
  first statewide FASD Diagnostic Intervention
  Clinic in Sarasota

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Building State FASD Diagnostic Capacity

• CBIR sponsored in Senate by Sen. Bennett and in
  House by Rep. Reagan (get local legislators
  involved and educated on the issue)
• Endorsed/supported by Sarasota County Community
  Alliance and Board of County Commissioners (get
  local community involved and educated on the
  issue)

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Building State FASD Diagnostic Capacity

• CBIR fully funded by House Senate and supported
  by Governor Bush non-recurring state funds
• Contract developed with DOH and signed August 1,
  2005
• Gov. Bush recommended in his 06/07 budget an
  increase to 380,000 of base funding and that it
  be recurring funds. Senate/House approved. Also
  approved 75,000 non-recurring to start FASD
  clinic in Jacksonville, FL. Jacksonville Clinic
  just awarded FASD Center for Excellence
  sub-contract.

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Building State FASD Diagnostic Capacity

• Surviving Tough Economic Times
• This session initially proposed a cut of 50 in
  base funding of 190,000 with the 75,000
  non-recurring eliminated
• Initiated a huge response to key legislators
  activated the Miami community (site of next
  clinic)
• 190,000 has been fully restored
• Additional 260,000 added as a line item
• Advocacy efforts now aimed at the Governors
  Office

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FASD Project DevelopmentFAS DPN Nationwide
Clinics
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Building State FASD Diagnostic Capacity

• Leverage Additional Funding
• Demonstrates sustainability efforts to State
  Government also shares the load between
  federal, state, local, private investment)
• Fl Center 07/08 FASD Budget
• 380,000 DOH funding (recurring)
• 100,000 Ounce of Prevention Fund of Fl (3 Years)
• 80,000 All Star Childrens Foundation
  (Sarasota)-3 grants
• 75,000 Non-recurring funds from state
  legislature through another CBIR in FY 07/08
• 30,000 Sarasota County Government FY 07/08
• Total FL Center FASD budget for FY 07/08 655,000

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Building State FASD Diagnostic Capacity

• Goals of FASD Project
• All connected/linked to FASD state Strategic Plan
• To increase statewide diagnosis/identification of
  young children ages birth through eight with
  FASD, as early identification and intervention
  has been determined to be a universal protective
  factor
• To provide statewide training to parents and
  professionals to increase education/awareness of
  FASD

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Building State FASD Diagnostic Capacity

• Goals of FASD Project
• To provide intensive intervention services to
  children with FASD and their families residing in
  Sarasota County.
• To seek additional local, state, and federal
  funding to expand FASD clinics statewide
• To explore how we might leverage federal dollars
  through Medicaid and other funding sources

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Building State FASD Diagnostic Capacity The
Vision

• Replication of Diagnostic/Intervention Centers in
  3 other key areas of state (Jacksonville, Miami,
  
• Panhandle (Panama City/Pensacola)
• Major public awareness/media campaign funded in
  part by alcohol industry

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Building State FASD Diagnostic Capacity

• Intensive cross-discipline training focusing on
  health, juvenile justice, mental health,
  education, developmental disabilities
• Evaluation Component to measure outcomes/success
  of project
• Approximate budget 4,620,000

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Building State FASD Diagnostic Capacity

• Diagnostic Process
• Using 4 Digit Code (Univ. of WA)
• Core Team of OT, Speech Pathologist, Mental
  Health Therapist, Psychologist, Developmental
  Pediatrician, Child Psychiatrist (on consult)
• Assessment takes 4 hours
• Currently conducting 6 clinics a month
• Diagnostic Assessments scheduled thru July

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Building State FASD Diagnostic Capacity

• Diagnostic Assessments completed in
• FY 05/06 Target 35 Performed 37
• Diagnostic Assessments completed in
• FY 06/07 Target 70 Performed 73
• Diagnostic Assessments Target for
• FY 07/08 84 - Will reach or exceed target

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Building State FASD Diagnostic Capacity

• Intervention Services/Strategies/Protocols
• Referrals for additional evaluations if deemed
  necessary per assessment
• Interventions/services individualized per
  child/family needs
• 89 of children assessed referred for MH services
• 76 of children assessed referred for OT services

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Building State FASD Diagnostic Capacity

• Intervention Services/Strategies/Protocols
• 51 of children referred for Speech services
• 66 referred for neurological evaluation
• 23 referred to Childrens Medical Services
• 14 referred for genetic testing/counseling
• 33 referred for Special Education services

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Building State FASD Diagnostic Capacity

• Intervention Services/Strategies/Protocols
• 37 children/families received intensive
  intervention services through FL Center FASD
  clinic FY 06/07
• Core Services include
• Parent advocacy/support/case management
• Mental Health services (2 to 3 hours a week)
• Psychiatry Services (med management)

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Building State FASD Diagnostic Capacity

• Intervention Services/Strategies/Protocols
• Core Services include
• Occupational Therapy Services (2 to 3 times a
  week)
• Respite services (3-4 hours a week)
• Behavioral support in home and pre/school or
  school (4 to 6 hours a week)
• Other services as needed

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Building State FASD Diagnostic Capacity

• Intervention Strategies in Progress of
  Development
• Specific Parent Skills Training
• Intensive Behavioral Consultation to pre-schools
  and schools specific to needs of children with
  FASD
• Social skills/problem solving child groups
  (focusing on pragmatic language, sensory
  processing, and social/emotional development).
  Facilitated by OT, Speech, MH practitioners.

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Building State FASD Diagnostic Capacity

• Outcomes to Date for Intervention Protocol N37
• Improved development in areas of
  social/emotional, adaptive functioning, language,
  and behavior. Tools used DAYC, Eyeberg Child
  Behavior Inventory, OT and Speech assessments
  (looking at additional tools)
• Decrease in parent stress. Tool used Parent
  Stress Index (Short Form)
• Parent Satisfaction 92 of parents reported
  satisfied/very satisfied with services.
• 86 of children involved in treatment maintained
  home or school placements

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Building State FASD Diagnostic Capacity

• Summary
• Start small Think Big!
• Make a personal connection to people in high
  places. Parent/child stories or real life
  connections are critical.
• Educate, educate, educate. Use cost/benefit data
  to show long term state costs to care for
  long-term.
• Have a clear plan of what you want to do and how
  you want to measure.
• Involve parents in all steps of planning and
  implementation.
• Use multiple funding opportunities.
• GOOD LUCK!! DONT GIVE UP!!!