State Policies Supporting Inclusion

1. State Policies Supporting Inclusion Abby J. Cohen, J.D., NCCICtechnical assistance specialist for Administration for Children and Families Region IX July 23, 2008

2. Background Who are the children we are talking about?

3. Who and How Many Children Are We Talking About? • More than 14 million children younger than 6 years need child care (U.S. Census Bureau, 2006) • 21.8 percent of households have children with special health care needs, which is approximately 10.2 million children (U.S. Department of Health and Human Services, 2007)

4. Who and How Many Children Are We Talking About? • A recent Pediatrics journal article found that approximately 13 percent of children in its sample (using direct assessment of the children) had developmental delays, making them eligible for Individuals with Disabilities Education Act (IDEA) Part C services • The study found that the prevalence of developmental delays is much higher than previously thought • For purposes of comparison, in 2002, Part C served 2.2 percent of children younger than 3 (www.pediatrics.org/cgi/content/full/121/6/e1503)

5. Definitions of Disability • Americans with Disabilities Act (ADA) definition: • Physical or mental impairment that substantially limits one or more major life activities (not specific conditions but functional impairments); • History/record of above; • Regarded as above; or • Associated with the above • States define “special needs child” for purposes of child care subsidy (i.e., CCDF) • States have their own civil rights laws with varying definitions

6. Definitions of Disability, con. • IDEA for Section 619 of Part B: • A child who is a child with one of a specific list of conditions who, by reason thereof, needs special education and related services; at state option can include a child experiencing developmental delays and who, by reason thereof, needs special education and related services • See Section 602(3)

7. Definitions of Disability, con. • IDEA for Part C: • An infant or toddler who needs early intervention because of experiencing developmental delay or has a diagnosed physical or mental condition that has a high probability of resulting in developmental disability; at state option can include at risk infants and toddlers as well as children who have received Part C and are now eligible for Part B until they enter kindergarten or elementary school • See Section 602(16) and Section 632(5)

8. Definitions of Disability, con. • Challenging behaviors and other behaviors and conditions may be viewed as disabilities, but have no legal protections under applicable statutes

9. Which Children Are We Considering? • Who has a disability can be defined by the law or not, but as a starting point, consider the following: • Mobility issues • Special health care needs • Mental health issues • Social/emotional issues • Developmental disabilities • Communication issues • Learning issues • Challenging behaviors

10. New Haven, CTChildren With Special Health Care Needs • A study examining the impact of child care health consultants on health and safety in 5 child care centers yielded the following results: • 16 percent of 206 children enrolled had at least 1 special health care need • Diagnoses: Asthma Down’s Syndrome Chronic otitis media Eczema Communication disorder Food, environmental, insect Cerebral palsy allergies Chronic benign neutropenia Gastroesophageal reflux Congenital scoliosis Growth delay Developmental delay Seizures Diabetes Vision impairment (Crowley, 2006)

11. What Is Inclusion? • Once again, there are varying definitions • The Division of Early Childhood, Council of Exceptional Children position statement on inclusion states the following: • “Inclusion as a value, supports the right of all children, regardless of abilities, to participate actively in natural settings within their communities . . .” (2000)

12. Inclusive Practice • In the view of those who developed Beginning Together,inclusive practice occurs when the following conditions are met: • “The interests, strengths, unique characteristics, and needs of ALL children are considered when planning activities, environments and interactions” • “Family members, [infant care] teachers, and specialists talk together about how to promote each child’s belonging in the setting” • “Appropriate adaptations, accommodations, supports and services are available and provided whenever needed to promote authentic belonging” (From Beginning Together, CIHS-SSU)

13. It Is About Belonging “When inclusion . . . is fully embraced, we abandon the idea that children have to become ‘normal’ in order to contribute to the world. Instead, we search for and nourish the gifts that are inherent in all people. We begin to look beyond typical ways of becoming valued members of the community, and, in doing so, begin to realize the achievable goal of providing all children with an authentic sense of belonging.” (Norman Kune, disability rights advocate)

14. It Is About Attitude • The “A” in ADA should have stood for attitude • Attitude is approximately 90 percent of compliance with the law • It is important to take the time to reflect on how our experiences shaped and continue to shape our attitudes toward persons with disabilities

15. Legal and Emerging Issues Understanding the Law and Identifying the Issues, Concerns, and Barriers

16. Major Laws Impacting Inclusion of Children in Child Care • ADA • Section 504 (when Federal funding is involved) • State civil rights laws/local human rights ordinances • IDEA (covers those entitled to early intervention and special education) • State child care licensing laws/regulations • Head Start requirements • State medical, nursing, and related health professions’ professional practice acts It is important to know all these laws and how they interact

17. ADA: Who Is Covered? • Coverage is for those who meet the following conditions: • Those with a physical or mental impairment that substantially limits one or major life activities; • Those with a record of impairment; • Those who are regardedas having the impairment; and • Those who are associated with persons with impairments or entities connected to these persons Interesting note: Only category one currently has disabilities

18. Who Must Comply? • Child care centers and family child care homes are considered to be “public accommodations” under the law • It applies to Territories; Tribes may not be sued by individuals, but the Title III provisions covering public accommodations can be enforced by the U.S. Department of Justice • Programs directly operated by religious entities are exempted from compliance

19. Making Reasonable Accommodations • Do not use admissions policies that screen out or tend to screen out persons with disabilities • Make modifications to policies, practices, or procedures unless to do so would fundamentally alter the nature of the service • Provide auxiliary aids and services unless this would create an undue burden or would fundamentally alter the nature of the service • Make physical modifications to existing facilities if they are readily achievable

20. Modification of Policies, Practices, and Procedures: • In a settlement between the U.S. Department of Justice, which enforces ADA, and a private provider, Smyrna Playschool dba Cumberland Child Care, the program agreed to modify policies to assist with allergy care and administer medication with an inhaler • Many programs have been willing to make reasonable accommodations to administer medications, but have found opposition or barriers in place from their State’s medical, nursing, or health professions’ professional practice acts or professional boards and/or licensing statutes/regulations

21. Modifications, con. • In an administrative ruling (University of Wisconsin Colleges, No. 05-02-2010 (OCR 04/09/02)) and an unpublished judicial decision (McDavid v. Arthur, 32 NDLR 186 (D.Md. 2006)), injection of insulin has been found to be a fundamental alteration of child care and not required by ADA • A number of States do allow use of an EpiPen • In an effort to comply with ADA, California licensing allows for exceptions that enable providers to empty ileostomy bags and do gastrostomy tube (G-Tube) feedings under certain conditions

22. Emerging Issue:Medication Administration • Increasing numbers of children require medication while in care • Child care licensing laws generally give programs the option of providing medication; if they choose to do so, they must meet certain conditions • Alvarez v. Fountainhead, 55 F. Supp 2d 1048 (1999) indicated that the decision to administer medication might no longer be optional when the child impacted had a disability protected by ADA and the medicine administered was a reasonable accommodation • It remains optional for a program to administer medication when the child does not have a disability protected by law (e.g., an acute infection requiring antibiotics)

23. Responding to Limitations • California, by statute, has allowed the administration of inhaled medication (California Health & Safety Code Section 1596.798) • California, by statute, has allowed for blood prick testing (Cal. Health & Safety Code Section 1596.797) • Connecticut’s Board of Nursing ruled that medication training is a professional activity not delegation for the nurse trainers; NJ is following this interpretation, which will encourage more nurses to do the training; Connecticut is one of the States that requires medication training for child care providers

24. Responding to Limitations • A recent lawsuit has been filed against the military under Section 504, which parallels ADA to require the administration of Diastat, a drug administered rectally when a child has prolonged seizures • Increasing numbers of States are requiring medication administration training for child care providers (see handout)

25. Bottom Line • Work must be done in States to eliminate barriers to full compliance with ADA or State law • In some instances, this may require a new law; in others, it may require new regulations or new administrative policies • Policymakers need to think about elimination of barriers and laws and policies that promote inclusion • Changes in society/technology require continuous review

26. Section 504 of the Rehabilitation Act of 1973 • Very similar to ADA • Must receive Federal funding from programs such as CCDF, Head Start, and the Child and Adult Care Food Program • No State immunity • No exemption for religious groups operating child care

27. State Civil Rights Laws • Learn more about your own State’s civil rights laws; they may be more protective of persons with disabilities than ADA or Section 504 • Unlike most situations, where Federal law is supreme, the most protective civil rights laws are those that govern, meaning that even a local law can trump Federal law • For example, California requires only a limitation, not a substantial limitation, meaning many more people are considered to have disabilities protected by law under California law than under ADA

28. State Civil Rights Laws, con. • A recent New Jersey case (a State that also has a more expansive law than ADA) ruled that a preschool is a place of public accommodation, and a boy with diabetes could not have enrollment rescinded once the program learned he required an insulin pump; the case will return to a jury to determine if the request to use the pump is a reasonable accommodation (Ellison v. Creative Learning Center) • Use of an insulin pump is allowed in California through an exception process

29. Some Other States With Generous Civil Rights Laws • Maine, Massachusetts, New Jersey, New York, and Washington are among the states that have more generous provisions in certain respects than ADA • A bill in Congress would restore the original intent of the framers and expand the current interpretation of who is covered

30. Balance and Tension • Providing access to the greatest extent possible for persons with disabilities • Ensuring the health and safety of all the children in care • Limiting the liability exposure of child care providers (and those who train them) to promote their willingness to support inclusionary practices—training about best practices and the law becomes key

31. IDEA • IDEA has a more limited definition of who is covered and entitled to services than ADA; children must not only fit into a category but also require early intervention or special education • Under IDEA, if one is eligible for special education, one is entitled to not only the special education, but also the “related services,” or services without which students cannot benefit from their education

32. IDEA • Services for children birth to 3 must presumptively occur in “natural environments” and for 3–5 in “least restrictive environments” or LRE—which to a large extent is child care • Emerging issue: Pressure on States as a result of indicator 6 of State performance plans to document “preschool LRE” • Emerging issue: How are universal/targeted, publicly funded preschool programs ensuring that they are including children with disabilities and not having parallel programs?

33. Contrast ADA and IDEA • Different definitions of who is eligible for protection • Different requirements imposed on those who are expected to comply • IDEA is the responsibility of school districts for 3–5 year olds (may be another entity for early intervention) that have school nurses (though this may be something of a legal fiction in many locales!) • Child care has limited access to health care providers (though some child care licensing laws require health consultants), underscoring the importance of emerging health care consultation systems • IDEA is an entitlement; ADA a civil rights law

34. State Policies Promoting Inclusion

35. Strategies to Promote Inclusion: Licensing • Review of licensing statute and regulations • Eliminate barriers from licensing regulations • Specialized regulations that are not warranted; issue of emergency plans • Increases in staffing regardless of individualized assessments • Ambulatory/nonambulatory issue in fire codes • Promote affirmative provisions in licensing regulations • Screening of children at enrollment to help with ChildFind • If child has an Individualized Education Plan or an Individual Family Services Plan,have provider, with consent, involved with it • Medication administration training; ability to administer medications • Accessibility of facilities • Inclusion training requirements part of licensing requirements • Problem of inconsistency with Federal statutes and enforceability

36. Strategies to Promote Inclusion: Subsidy System • Definition of who is a special needs child under CCDF is given to the States; some States define it broadly and do not limit the definition to IDEA’s definition (see handout) • Use of optional authority under CCDF to define children with disabilities eligible for care older than 13 but younger than 19 (52 jurisdictions)

37. Strategies: Subsidy System • Taking into account increased costs of caring for children with disabilities in making eligibility determinations based on income: • “The income spent on any regular, ongoing cost that is specific to a child’s disability is excluded from definition of income” (Iowa) • “Recurring expenses for medical care or prescribed adaptive equipment for special needs children shall be subtracted from gross family income” (Maine)

38. Strategies: Subsidy System • Guarantee subsidy eligibility (12 States) or give priority over other CCDF eligible families (33 States) • Special needs rates through the subsidy program (some flat rate increase, percentage increase, individual documentation)—lack of information on utilization and effectiveness of each method and how they compare (see handout)

39. Strategies to Promote Inclusion: Quality Money • Increased use of screening and referrals in child care to early intervention/special education, and health, including mental health—requires training and knowledge of systems • Enhanced referral services provided by child care resource and referral agencies • Inclusion specialists—variation in where housed and level of service—information only or coaching onsite? How well is this working?

40. Strategies to Promote Inclusion: Quality Money, Professional Development • Integrating training about inclusion into all early care and education professional development • Supports/Initiatives to enable the care of children with challenging behaviors • Provision of targeted resources for training on inclusion, special adaptive equipment, and assistive technology

41. Strategies to Promote Inclusion: QRS • Currently, there are 17 States with a statewide quality rating system (QRS) • Of these, a few have incorporated standards at different star levels, which help to promote the inclusion of children with disabilities and recognize its importance to calling a program a quality child care program (see handout)

42. What Can You Share? • What are some other existing State policies you are aware of that promote inclusion? • What are some State policies which should exist that would promote inclusion?

43. Resources • National Early Childhood Technical Assistance Center, www.nectac.org • Center on Social & Emotional Foundations for Early Learning, http://csefel.uiuc.edu • Division of Early Childhood, Council for Exceptional Children, www.dec-sped.org • ADA homepage, U.S. Department of Justice, www.usdoj.gov/crt/ada/adahom1.htm • Access Board, www.access-board.gov

44. Resources, con. • National Professional Development Center on Inclusion, http://community.fpg.unc.edu/npdci • SpecialQuest, www.specialquest.org • Quality Child Care for ALL: Recommendations and Quality Child Care for ALL: Recommendations for Implementation, www.newmexicokids.org

45. Resources, con. • Healthy Child Care Consultant Network Support Center, http://hcccnsc.edc.org • Child Care Law Center, www.childcarelaw.org • NCCIC, http://nccic.acf.hhs.gov, 800-616-2242

46. Homework! Some questions for you to take home to learn more ... • Find out more about your States’ civil rights laws • Identify which, if any, health procedures are allowed or not allowed under your States’ licensing statutes/regulations • Is the current framework problematic in terms of child care interfacing with special education and early intervention? • Find out more about the child care/early education in your State and how it operates • Are there points of interface with early intervention/special education/health/mental health/developmental disability systems? • Could regulations/practices of these systems be changed to strengthen the connection?

47. Homework, con. • Find out more about the benchmark your State created for preschool LRE in its State Performance Plan submitted to the federal Department of Education and what plans it has to meet it • Generally, what are the systems barriers preventing or making inclusion difficult?

48. Thank You Prepared by NCCIC 10530 Rosehaven Street, Suite 400●Fairfax, VA 22030 Phone: 800-616-2242● Fax: 800-716-2242●TTY: 800-516-2242 Email: info@nccic.org●Web: http://nccic.acf.hhs.gov