Early intervention

1. Early intervention Advocating for Those Who Can’t Speak

2. What is Ei? • EI is a comprehensive interagency program that supports children up to age 3 with developmental delays in their efforts to realize their full potential. • It reduces the likelihood of delays among at-risk children • It assists and empowers families to meet their child’s and their own needs • It entitles children regardless of race, ethnicity, or income to services

3. History of ei • Brown v. Board of Education 1954: established universal right of all children to a decent education • Project Head Start 1964: public policy effort to improve school readiness and social development of disadvantaged children • The Education for All Handicapped Children Act 1975: ensured all children should receive a free and appropriate education

4. History of Ei • Individuals with Disabilities Education Act (IDEA) 1986: reauthorization of The Education for All Handicapped Children Act that now mandated public schools to serve children with disabilities starting at age 3 • Part H (1987-96), Part C (1997 on): created services and supports in all 50 states and US territories creating the early intervention system. This also allowed states to extend early intervention to at risk children (VLBW, children born to mothers with MR, etc) • In NY state, Early Intervention Program was established under Article 25 of the Public Health Law in July of 1993

5. How do you refer to ei? • Children under age 2 can be referred by their doctors, child care agencies, social service workers, community –based agencies, and by their parents • Referral form with instructions: • www.nyc.gov/html/doh/downloads/pdf/earlyint/ei-referral-form.pdf • Contact your EI official: 1-800-522-5006; in New York City–311 • Sample letter for parents to refer their own child: http://www.health.state.ny.us/publications/0532/sample1.htm

6. What happens after a referral? • Early Intervention Official will assign an initial service coordinator • If the child is found to be eligible, an Individualized Family Service Plan (IFSP) will be created • If not eligible the service coordinator should explain to the parent how to access other services and/or how to appeal the decision • Reevaluate the IFSP every 6 months • Preparation for transition: coordinating service providers, if necessary contacting Committee on Preschool Education (CPSE) in the child’s school district

7. What services are availabe? • Special Instruction • Occupational Therapy • Speech Therapy • Physical Therapy • Psychological Services • Family Training • Counseling • AssistiveTechonology • Respite Services

8. Is EI effective? • EI increases the developmental and educational gains for the child and improves the functioning of the family • Children in EI need fewer special education services later • They are held back less

9. Research supporting EI • Longitudinal study of Ypsilanti Perry Preschool Project: at 19 years more finished high school, went on to postsecondary program, had employment, scored higher on reading, math, and language tests at all grade levels vs. children who did not attend program (Berruta-Clement, et al. 1984) • Meta-analysis 31 studies in children <3 found EI effective in promoting developmental progress in infants and toddlers with biologically based disabilities (Shonkoff JP, Hauser-Cram P 1987) • EI minimizes declines in development (Guralnick, MJ 1991) • Longitudinal Study 25 years later for adults who had participated in Brookline Early Education Project found in urban group completion of program associated with >1 year additional schooling completed, fewer low income (<20,000) earners, more positive health behaviors, and less depression than matched controls (Rosenberg, et al. 2008)

10. Early Intervention Municipality Performance Data - New York City

11. Why make changes? Exploding costs to the state for EI: -previously, state paid for all services regardless of parents’ income level -75,000 children participating in EI, each costing the state 9,000$ annually -other states pay 4,000$ per child

12. Explosion in ei costs

13. Budget cuts and what they mean specifically for eligibility • 2010-2011 Budget Cuts and regulation changes (finalized June 3): • 1. Parent fees-previously all covered by the state regardless of income level • 2. Decreasing reimbursement rate to providers by 10% for home-based services • 4.. Providers/Agencies to bill Medicaid or private insurers directly • 5.. New eligibility criteria • 6.Use of ABA aides • 7. New standards for provider approval

14. How are our patients affected? • Parent fees: • State proposes a “Medicare-like” funding structure where 80% of funding would come from the state and counties and 20% would be from parents and health insurers • Families earning less than 250% of the Federal Poverty Level are exempt (= 46,000$ a year for a family of 3) • Health insurers would need to cover the first 5,000$ in EI costs

15. How is this a problem? • Payments would need to be made quarterly • If a parent missed one payment the child will lose EI services and become ineligible • Families must now provide proof of income, otherwise they have to pay at the highest fee level which could impede the children of homeless families, children in foster care, and particularly the children of undocumented immigrants from access to services

16. Defining developmental delay • State definition: a child who has not attained developmental milestones expected for the child’s chronological age, adjusted for prematurity in one of the following areas • 1. cognitive • 2. physical • 3. communication • 4. social or emotional development • 5. adaptive development

19. Eligibility • Previously: 33% delay in one functional area or 25% delay in two functional areas • Now: 2 standard deviations below the mean in one domain or 1.5 standard deviations below the mean in twoseparatedomains • For language specifically, must show delays in both expressive and receptive language or in one with the presence of specific predictors of continued language delay

20. Predictors of continued delays • Language Production • Particularly small vocabulary for age • Less diverse vocabulary particularly in regard to verbs • Preponderance of general all-purpose verbs (such as "do," "make," "want," "go") • More transitive and fewer intransitive verbs (such as "give ball") • Language Comprehension • Presence of 6-month comprehension delay • Large comprehension-production gap with comprehension deficit

21. Predictors of Continued Delay • Phonology • Few prelinguistic vocalizations • Limited number of consonants • Limited variety in babbling structure • Fewer than 50% consonants correct (substitution of glottal consonants and back sounds for front) • Restricted syllable structure • Vowel errors • Imitation • Few spontaneous imitations • Reliance on direct model and prompting in imitation tasks of emerging language forms

22. Predictors of continued delay • Play • Primarily manipulating and grouping • Little combinatorial and/or symbolic play • Gestures • Few communicative gestures, symbolic sequences, or supplementary gestures • Social Skills • Behavioral problems • Few conversational initiations; interactions with adults more than peers • Difficulty gaining access to activities • Health and Family History • Recurrent otitis media • Family history of persistent problems in language learning

23. Who does this affect? • Mainly affects patients with language delays • A child with a delay of 25% or 1.5 standard deviations below the mean in two aspects of a single domain no longer qualifies for EI A child that qualifies because he or she meets the criteria of a delay 2 standard deviations below the mean can lose services if there is improvement in any aspect of that domain

24. Examples • A child with a delay of 1.5 standard deviations in expressive language and 1.5 standard deviations in receptive language with no other delays is not eligible • A child with a score of 2 standard deviations below the mean in expressive language but no (or less significant) delay in receptive language is not eligible • A child that starts out 2 standard deviations below the mean in expressive and receptive language could lose services with improvement in one of those aspects

25. Doh clinical practice guidelines for communication disorders • Severe language delay: • Children < 18 months: • Has not reached any of the normal language milestones expected for children in the next younger age range and none of the upper limits expected for the child’s age range

26. Severe language delay continued • Children 18-36 months: • No words by 18 months • Less than 30 words by 24 months • No two word combinations by 30 months • Documented presence of known predictors of developmental delay in language production, comprehension, phonology, imitation, play gestures, social skills, health and family history

27. What happens to the children already enrolled? • All children enrolled prior to June 3rd do not need to meet the new eligibility criteria until the EI official requests a new evaluation • New evaluations cannot be done before six months into the program OR there is an observable change that may indicate that the child is no longer eligible

28. What can we do? • Email state legislators: sample letters for parents as well as others can be found through Advocates for Children New York at http://capwiz.com/iacny/state/main/?state=NY • Write letters/call your state legislators: to find your State Senator http://www.senate.state.ny.us/senatehomepage.nsf/senators?OpnForm • To find your NY Assembly member go to: http://www.assembly.state.ny.us/mem/

29. Additional resources for our patients and parents • Early Childhood Direction Centers: www.vesid.nysed.gov/specialed/transition/whocan.htm • Parent to Parent of New York State: www.parenttoparentnys.org • Other sites for parent information: • www.taalliance.org • www.advocacycenter.com • www.advocatesforchildren.org • www.resourcesnyc.org

30. Further resources • Advocacy Services: www.cqc.state.ny.us • Mediation: If with the new changes in eligibility a child is deemed to no longer be eligible parents can request mediation • Parents can send a letter to their EI official to ask for mediation , EI official then notifies Community Dispute Resolution Center • The mediation process must be completed within 30 days of the Community Dispute Resolution Center receiving the request • If an agreement is made then a written agreement is prepared detailing the services to be provided • If no agreement is reached then parents can request an impartial hearing

31. Steps for mediation • Parents can send a letter to their EI official to ask for mediation • EI official then notifies Community Dispute Resolution Center • The mediation process must be completed within 30 days of the Community Dispute Resolution Center receiving the request • If an agreement is made then a written agreement is prepared detailing the services to be provided • If no agreement is reached then parents can request an impartial hearing • More info at: New York State Dispute Resolution Association www.nysdra.org • www.nyhealth.gov/publications/0532/index.htm

32. References • Early Intervention. New York City Department of Health and Mental Hygiene. 22 February 2011 <http://nyc.gov/html/doh/html/earlyint/earlyservices.shtml>. • Early Intervention. New York City Department of Health and Mental Hygiene. 22 February 2011 <http://nyc.gov/html/doh/html/earlyint/earlydif.shtml>. • Early Intervention Program. New York State Department of Health Information for a Healthy New York. 22 February 2011< http://www.health.state.ny.us/ >. • Early Intervention Program. New York State Department of Health Information for a Healthy New York. 22 February 2011< http://www.health.state.ny.us/ >. • Early Intervention Program. New York State Department of Health Information for a Healthy New York. 23 February 2011 <http://www.health.state.ny.us/community/infants_children/early_intervention/ei_revised_regulations_webinar-1_overview_faqs.htm>. • Early Intervention Program. New York State Department of Health Information for a Healthy New York. 23 February 2011 <http://www.health.state.ny.us/statistics/community/infants_children/early_intervention/local_program_performance/new_york_city.htm#three>. • Early Intervention Program. New York State Department of Health Information for a Healthy New York. 24 February 2011 <http://www.health.state.ny.us/community/infants_children/early_intervention/memoranda/2005-02/eligibility_criteria.htm>. • Early Intervention Program. New York State Department of Health Information for a Healthy New York. 25 February 2011 <http://www.health.state.ny.us/community/infants_children/early_intervention/memoranda/2005-02/appendix_f.htm>. • Early Intervention Program. New York State Department of Health Information for a Healthy New York. 25 February 2011 <http://www.health.state.ny.us/community/infants_children/early_intervention/memoranda/2005-02/appendix_g.htm>.

33. REFERENCES • Ramey CT, Ramey SL. “Early Intervention and Early Experience.” American Psychologist. 1998; Vol 53 (2): 109-120. • Bailey DB, Gebbeler K, Scarborough A, Spiker D, Mallik S. “First Experiences with Early Intervention: A National Perspective.” Pediatrics. 2004 Sep; 114 (3): 896. • Palfrey JS, Hauser-Cram P, Bronson MB, Warfield ME, Sirin S, Chan E. “The Brookline Early Education Project: A 25 Year Follow- up Study of a Family-Centered Early Health and Development Intervention.”Pediatrics.” 2005 Jul; 116 (1): 144-52. • Early Intervention Scheduled for More Cuts in State Budget. New York State Speech-Language-Hearing Association, Inc. 24 February 2011 <http://www.nysslha.org/i4a/headlines/headlinedetails.cfm?id=52>. • Meeting the Health Care Needs of New Yorkers. Division of the Budget New York State. 25 February 2011. <http://www.budget.state.ny.us/pubs/archive/fy0304archive/fy0304littlebook/health.html>. • Fertig, Beth. “Schools Chancellor Says Cuomo’s Budget Cuts are Unjust.” WNYC News Blog 15 February 2011: WNYC. • Weaver, Teri. “First Look at Cuomo’s Proposed Budget Shows Cuts, Consolidation.” The Post Standard 1 February 2011: The Post Standard. • Important Action Alert: Oppose Harmful Changes to Early Intervention. Lublin, Nina. Resources for Children with Special Needs. 23 February 2011 <http://www.resourcesnyc.org/advocates039-voices-blog/important-action-alert-oppose-harmful-changes-early-intervention>.