CT Birth to Three System and You: Working Together to Meet Patients’ Needs September 16, 2014

1. CT Birth to Three System and You: Working Together to Meet Patients’ Needs September 16, 2014 Presenters: Ann Milanese, MD, Associate Professor of Pediatrics at UCONN School of Medicine, the Medical Director of Education Rehabilitation Services and Division Chief of Development and Rehabilitation Medicine at CCMC and Medical Advisor to the Connecticut Birth to Three System Cliff O'Callahan, MD, PhD,Pediatric Faculty and Director of Nurseries, Middlesex Hospital.  He serves as Chair of the Multidisciplinary Action Group of the AAP Section Forum Management Committee, former President of CTAAP and is the Immediate past Chair of the AAP Section on International Child Health. Eileen McMurrer, M.Ed., CT Birth to Three System Public Awareness Coordinator and University of CT Health Center medical school faculty

2. Today we will talk about: • How and when to make a referral to CT Birth to Three • Eligibility criteria for early intervention (EI) • Core components of early intervention • The range of services available through Birth to Three • Strategies for successfully meeting patients’ needs in collaboration with Birth to Three

3. What is Birth to Three? • A system of supports for families to help them meet the needs of their • infants and toddlers who have developmental delays • Part C of a federal law called the Individualswith Disabilities • Education Act (IDEA), and state law 17a-248. Part B of IDEA is • special education for children ages 3 – 21 years. • In Connecticut, the Department Developmental Services is the lead • agencythat administers the Birth to Three System. • Contracted Birth to Three programsprovide supports and services. • Each program serves a specific set of towns. Three specialty • programs serve children with hearing loss statewide. Autism-specific • programs work with children on the Autism Spectrum. • Medical Advisor liaises with health care professionals and • provides guidance to Birth to Three

4. System Overview Federal Dept. of Education, Office of Special Education Programs CT Lead Agency: Department of Developmental Services (DDS) Annual Budget: $49.55 million (FY14) Personnel: 14 DDS central office staff 45 programs approx. 1,200 direct care providers Children and Families Referred: 8,720 in FY14 Served: 9,686 in FY14; may have been referred in a previous fiscal year Service Locations:Child’s Home or Child Care 97%

5. Required System Components - Federal • ComprehensiveChild Find and referral system • Public Awareness program including information for parents • Rigorous definition of “developmental delay” • Appropriate EI services available for all eligible children • Timely, comprehensive, multidisciplinary evaluations • IFSP and service coordination for each eligible child • Policies and procedures to ensure that early intervention services are provided in natural environments • …plus nine others…

6. Screening and Early Identification • PHCPs: • developmental surveillance • Autism screening • Mental health screening Improved screening using valid instruments leads to earlier referral and identification. Earlier identification and service provision leads to better child and family outcomes and significant cost savings.

7. Referral for Evaluation Anyone can refer a child • Only the Parent can give consent to proceed Most parents refer their own child (61%) • Parents who did not previously know about Birth to Three learned about it from: • PHCP (66%) Other health care provider (6%) • Relative, friend (17%) Child care or preschool (6%) • 2-1-1 or ASQ (3%) Media (2%) No need to wait for a diagnosis to refer

8. Child Development Infoline (CDI) CDI is the intake office for all Birth to Three referrals by phone, fax or online • 1-800-505-7000 • TTY and Language Line phone interpreter service available • fax referral form to 860-571-6853 • www.birth23.org-- “Referrals – Eligibility” tab at top CDI staff are available M-F, 8am - 6pm Voicemail at all times Children who are within 45 calendar days of their 3rd birthday are redirected to their local school district.

9. Billing Medicaid for completed Screenings Effective August 1, 2014, providers who bill for completion of developmental and behavioral health screening tools using CPT code 96110 must add a modifier that indicates the outcome of that screen as Positive (U3), or Negative (U4). When a child has a positive screen, the provider should: • Provide age appropriate anticipatory guidance • Refer for evaluation/assessment Birth to Three provider agencies are all Medicaid-enrolled providers. Children under three years old with a positive screen should be referred to Birth to Three for a developmental evaluation.

10. Referral from PHCP CDI confirms parent choice to obtain an evaluation for their child, then sends a letter to referral source with: • Name of B-3 program that will determine eligibility, if the parent agreed (this is where you send medical records with parent consent) • OR, • Notice that: • the family could not be reached, or • the family declined services, or • the child was previously referred

11. Supporting Parent Understanding When you talk with the parent about making a referral for their child, please tell them • Why you are concerned about their child’s development • how important early brain development is for later success in school and in life • the evaluation is FREE • Birth to Three is just as important as following up with any other specialist, e.g., neurologist

12. Eligibility Children are eligible in Connecticut when they 1. have a significant developmental delay 2 Standard Deviations below the mean in one area of development, or 1.5 Standard Deviations below the mean in two or more areas of development (89% in FY14) OR 2. have a diagnosed physical or mental condition with a high probability of resulting in a developmental delay (11% in FY14)

13. Using Medical Records for Eligibility Section 303.321(a)(3)(i) of IDEA Part C regulations state that “a child’s medical and other records may be used to establish eligibility (without conducting an evaluation of the child)”. Therefore, if a program obtains written results of an existing evaluation(s), these may be used to determine the child’s eligibility when: • Testing was completed within the past 3 months, and • Report provides information from a standardized, norm referenced instrument that confirms scores meeting Connecticut eligibility criteria, and • The determination is made by an appropriately composed Birth to Three team

14. Children who are Not Eligible Not eligible == No developmental delay • Continue developmental surveillance • Provide parent with anticipatory guidance • Refer to Help Me Grow 1-800-505-7000 for other community supports • Encourage parent to enroll their child in Ages and Stages Questionnaires (ASQ) • Request parent consent to have screening results sent to your office If you are still concerned 90 days later, Re-Refer to Birth to Three

15. Supporting Parent Enrollment Most families of eligible children choose to enroll • Some do not… • “State system”…..DCF? • Home-based supports: + / - • Parent sliding fee scale • Not ready to accept their child’s delay • Wait and see… • Are uncertain about what they are being offered

16. Key Elements of EI Services • Family-centered • Coordinated • Evidence -based • Strengthen positive parent-child relationships • Primary provider is the service coordinator • Community connections and supports • e.g., Medical Home, Early Head Start, libraries, town park programs

17. Birth to Three Programs All Birth to Three Programs are comprehensive This means that every program has the staff and expertise to deliver all services as required under Part C of IDEA to enrolled children Three types: • General Programs - work with any eligible child and family • Programs for children who are Deaf or Hard of Hearing • Programs for children with Autism spectrum disorders

18. Services and Supports • focus is on the whole family, not just the eligible child • designed around family’s needs, concerns, and priorities • usenatural learning opportunitiesthat happen throughout the day • familychooses their desiredoutcomes and which skills to work on • with their child • service coordinatorcoaches the caregivers and works with the child • and family in a close partnership • services are transdisciplinary and reflect input and expertise from • the entire Birth to Three team and other providers

19. Types of Early Intervention Services Every family is given service coordination. Additional services may include: • assistive technology devices and services • audiology services • family training, counseling, and home visits • health services • medical diagnostic or evaluation services • nursing services • nutrition services • occupational therapy (OT) • physical therapy (PT) • psychological services • Sign language and cued language • social work services • specialized instruction • speech and language services • transportation or mileage reimbursement when necessary to receive other IFSP services • vision and mobility services

20. IFSP (Individualized Family Service Plan) • Child and Family Information • Daily Activities: • What is/is not going well? • What Else is Important • Child/Family Outcomes • What’s Next for Us? including Transition • Early Intervention Services and Supports • Who is Part of Our Team

21. IFSP Section Eight: Services Page Must be signed by a physician or APRN before services can begin Thank you for reviewing, signing and returning the IFSP to the Birth to Three program working with the family as soon as possible to avoid delays in starting services and family supports.

22. Infant Mental Health P.A. 13-178 was established to meet the behavioral health needs of all children in Connecticut Infants and toddlers may experience mental health issues directly themselves, or from their caregivers, e.g., maternal depression. Elements of support for infant mental health include: • easy access for diverse families • a system of early identification of concerns, screening, and referral • full access to an array of supportive resources • promotion of family knowledge of conditions and service delivery systems • ensuring family-centered care with family satisfaction as an outcome of interventions – Adams, et al., 2013, Pediatrics 132;e1073 ALL Birth to Three programs employ mental health professionals trained in early identification and treatment of social-emotional issues.

23. What does a home visit look like? Providing effective supports in a family’s home requires • updated professional knowledge • sensitivity and respect • the ability to fold new learning strategies into the child’s daily activities • recognizing and acting on what truly matters to the family To see what EI home visits look like, go to https://www.youtube.com/watch?v=8fOJGmIdj0c&list=PLCBE09BD900359C53

24. Family Cost Participation Sliding Fee based on income and family size • Applies to families with adjusted gross annual incomes greater than $45,000 and not eligible for Medicaid • One fee charged per month regardless of: • number of children enrolled in Birth to Three • number of EI visits provided Fee can be adjusted when the family has documented extraordinary expenses Parents are also asked for permission to bill their insurance • EI visits do not affect annual or lifetime insurance caps under state law

25. Services at No Cost Parents of eligible children may opt to receive: • Service coordination • Evaluation and assessment • Service plan development and review, including transition planning • Due Process rights WITHOUT any parent fee Service Coordinator may assist the parent in locating direct services from community providers.

27. Life after Three • Birth to Three supports must end by the child’s 3rdbirthday • The parent and service coordinator begin planning for this up to six months prior but no later than 90 days before • Free Appropriate Public Education at 3 – required by federal law • Service coordinator can facilitate referral for preschool special education or other community supports

28. Preschool Special Education • IDEA Part B – different requirements than Part C • Each school district determines eligibility criteria • No automatic eligibility due to diagnosed condition or prior Birth to Three enrollment • Planning and Placement Team (PPT) - which includes the parent(s) - makes eligibility, placement, and service decisions • Individualized Educational Program (IEP) written by PPT

29. Opportunities for Collaboration Ask the parent for consent to: • share medical information with the B23 team • receive the B23 evaluation results If the child is eligible, participate in development of the IFSP service plan; communicate with the parent about their Birth to Three visits If the child is not eligible, • encourage the parent to enroll in Help Me Grow, ASQ • re-refer after 90 days if concerns remain

30. Closing Thought We all have an obligation to Do Best by Children and Families through effective use and coordination of all resources available

31. Questions? 1-800-505-7000 www.birth23.org eileen.mcmurrer@ct.gov