A Service of the Child Care Bureau

State Policies Supporting Inclusion

Abby J. Cohen, J.D., NCCIC technical assistance specialist for Administration

for Children and Families Region IX

July 23, 2008

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Background

Who are the children we are talking about?

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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)

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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)

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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

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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)

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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)

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Definitions of Disability, con.

Challenging behaviors and other behaviors and conditions may be viewed as disabilities, but have no legal protections under applicable statutes

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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

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New Haven, CT Children 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 SyndromeChronic otitis media EczemaCommunication disorder Food, environmental, insect Cerebral palsy allergiesChronic benign neutropenia Gastroesophageal refluxCongenital scoliosis Growth delayDevelopmental delay SeizuresDiabetes Vision impairment

(Crowley, 2006)

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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)

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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)

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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)

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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

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Legal and Emerging Issues

Understanding the Law and Identifying the Issues, Concerns, and Barriers

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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

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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 regarded as 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

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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

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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

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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

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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

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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)

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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

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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)

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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

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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

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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

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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

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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

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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

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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

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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?

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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

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State Policies Promoting Inclusion

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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

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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)

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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)

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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)

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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?

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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

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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)

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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?

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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

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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

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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

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Homework!

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?

Some questions for you to take home to learn more ...

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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?

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Thank You

Prepared by NCCIC

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Email: info@nccic.org ● Web: http://nccic.acf.hhs.gov