Children with Disabilities and Special Needs Michael Miguelgorry , DDS Stacey Kennedy, CRIHB

1. Children with Disabilities and Special Needs Michael Miguelgorry, DDS Stacey Kennedy, CRIHB Stephanie Myers, WestEd Center for Prevention and Early Intervention Debbie Sarmento, Family Resource Centers Network of California

2. Who is with us today? • Are you: • A parent of a child with special healthcare needs • A staff member at an organization • A double-agent (parent and staff member)

3. What we will cover today • Early Start • Early Start Family Resource Centers • Establishing Healthy Eating Habits Infants & Toddlers • Training and scholarship opportunities through West Ed

4. What are special health care needs? Children with special health care needs are those children who have or are at risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.

5. How many children have special health care needs? • 12.8 percent of children have a special health care need • One in five households has a child with special health care needs • Any child, at any time, could develop a disability or chronic health condition.

6. CA’s early intervention system Federal Law: IDEA Part C What is Early Start? 6

7. California Early Start Partners • Dept. of Developmental Services (DDS) • Regional Centers • Vendored Programs • CA Dept. of Education (CDE) • Special Education Local Plan Areas (SELPAs) • Local Education Agency (LEAs) • Local School Districts • Early Start Family Resource Centers (ESFRCs) 7

8. Infants and toddlers from birth up to 36 months who have: a developmental delay in either cognitive, communication, social or emotional, adaptive, or physical and motor development including vision and hearing; Which children are eligible? 8

9. or established risk conditions of known etiology with a high probability of resulting in delayed development 9

10. Assistive Technology, including devices or services Audiology Behavior Therapy Durable Medical Equipment What services are provided? 10

11. Family Training, Counseling, and Home Visits Health Services, Nursing Services and Medical Services* Interpreter / translator* Nutrition Services* Early Start Services 11

12. Occupational Therapy Physical Therapy Psychological Services Service Coordination Special Instruction 12

13. Speech Therapy Transportation and related costs* Vision Services Other Services* * As necessary for family or child to enable child to benefit or family to participate in early intervention services 13

14. Self referral Physician referral Otherprofessionals How are children referred? 14

15. 45 day timeline Family is assigned a service coordinator to assist through evaluation and assessment procedures. Parent consent for evaluation is obtained. Evaluations and assessments for the child's development are done. What happens when a child is referred? 15

16. Individual Family Service Plan (IFSP) is developed • Identify early intervention services that are provided in the family home or other community settings. • Referral offered to Early Start FRC

17. No cost to families for evaluation, assessment and service coordination. Public or private insurance is accessed for medically necessary therapy services including speech, physical and occupational therapies. Services that are not covered by insurance will be purchased or provided by regional centers or local education agencies. Family Cost Participation Program Camping Respite Day care How much does it cost? 17

18. What to do if a child needs to be referred to Early Start • Talk to parents – provide them with next steps • Family may be hearing news for the first time and may need assistance • Encourage them to call their Family Resource Center • Ask parent for their consent to provide their name and contact information to the FRC

19. What is Prevention Resource and Referral Services (PRRS)? • Infants and Toddlers “at risk” for developmental delay or disabilities under age three • At risk criteria – two or more risk factors • Diagnosed by qualified clinician (pediatrician, family physician, regional center, High Risk Infant Program, Neonatal Intensive Care Unit) • All referrals for PRRS must first be found ineligible for Early Start Services.

20. How did PRRS Develop? • 2009 Early Start eliminated “at risk” from eligibility • 2009 Established regional center Prevention Program • 2011 Reduced prevention scope to Prevention Resource and Referral Services (PRRS)

21. Who will serve the babies? • DDS contracting with FRCNCA through Support for Families for PRRS • FRCNCA coordinates PRRS statewide through contracts with local FRCs • FRCs provide resource, referral and outreach services

22. Where will the babies come from? Regional Centers Babies ineligible for Early Start with identified risk factors

23. What will the babies receive? • Information and resources • Referral to other community services • Referral to regional centers for Early Start re-evaluation • Follow up contacts • Outreach that facilitates referral relationships, screening opportunities and community services

24. What will Regional Centers do? • Single point of entry for all children suspected of having a developmental delay including those with established risk and those at risk. • Conduct evaluation for Early Start. If child is not eligible determine if a referral to PRRS is appropriate based on at-risk factors. • Refer to PRRS with parent consent

26. Early Start Family Resource Centers Focus: Families of infants and toddlers (birth to 3) with developmental delays and disabilities. Provide: Parent to parent support, support groups, training for parents and professionals, information and referral, community outreach and awareness

27. Goal: To provide families with parent to parent support that enhances their ability to support their child’s development • ESFRCs: 47 across California, serving all families in California • Website: frcnca.org

28. Informationand Support Topics • Impact of disability/special health care need on family and friends; • Stress of dealing with multiple doctors, learning a whole new vocabulary, and dealing with the financial aspects of disability; • Support and advice about classes and services, talking to special educators and trying to remain optimistic;

29. Playmates and friends for their child who may not play the same way as other children or with the same kind of toys; • Learn about keeping their family happy and healthy while making major changes in the family daily life and activities; or • How to have confidence in their own impressions and ideas for what their child needs and wants.

30. When would you refer a family to an Early Start FRC? • When families have just learned that their child has a disability or special health care need. • When families are dealing with a new stage in their child’s life.

31. ESFRC Variables • Location • Staffing • How services are provided • Other funding streams 31

32. Other Family Resource Centers • Generic term • Differences • Focus • Target population • Philosophy • Scope of service 32

33. Other vital supports • Family (self defined) • Church groups • Circle of friends • Child care • In-home services

34. How 40+ Programs Might Touch One Family

35. Education Health & Food Social Services Child & Family Services Mental Health & Probation • Public Schools • ESEA, Title I • School Lunch & Breakfast • Head Start • IDEA • After-School Programs • Textbook Funding • Tests & Achievement • Teacher Issues • GED • Medi-Cal – EPSDT • Healthy Families Parent Expansion • Child Health & Disability Program • Expanded Access Primary Care • Trauma Case Funding • Co-payments for ER Services • Child Lead Poisoning Prevention Program • HIV/AIDS Prevention & Education • Breast Cancer Screening • Food Stamps • WIC • TANF • GAIN, CAL Learn, Cal WORKS, etc. • Child Care – CCDBG, SSBG, Cal WORKS Child Care, etc. • After-School Programs – 21st Century Learning Centers, etc. • Promoting Safe & Stable Families • Child Abuse & Neglect Programs • Foster Care – Transition, Independent Living, Housing, etc. • Adoption Assistance, Adoption Opportunities • School-Based MH Services for Medi-Cal Kids • Probation Officers in Schools • Cardenas-Schiff Legislation • Health Care Through Probation • Mental Health Evaluations • Juvenile Halls Boyfriend in trouble Baby 1 1/2 Mom Dad 9 year old 5 year old Mom’s sister Margaret DunkleThe George Washington University& The LA County Children’s Planning Council2002