Healthy Kids, Healthy Care: Children with Special Needs

Healthy Kids, Healthy Care:
Children with Special Needs
National Resource Center for Health and Safety in Child Care
1-800-598-5437
http://nrckids.org

Key Questions

Have caregivers had training or specialized education in serving children with special needs?

Are caregivers willing and able to learn new skills that might be required to successfully include a child with special needs?

Are they willing to be involved in helping to implement the child's education plans: Individualized Family Service Plan [IFSP], Individualized Education Plan [IEP]?

How would the environmental aspects of the program (light, sound, level of clutter, activities, etc.) work for your child?

What physical changes would need to be made for your child?

Do caregivers show enthusiasm for planning activities that can be enjoyed by children at various developmental stages?

Hints:

Children learn to appreciate all people by getting to know others who aren't exactly like them.

You and your child have a lot to offer a program. Choose a caregiver who values diversity and is not afraid of working with a child with special needs.

Ask for references with families who currently use the program, in addition to the references offered by the caregiver.

Want to know more?

Where can you get help in finding child care for your child with special needs?

Child care resource and referral (R&R) programs are a great place to start. To find your local R&R, contact Child Care Aware at: http://www.childcareaware.org or call (800) 424-2246

Things to discuss when interviewing a caregiver before care begins:

Describe your child's care needs, not their labels and diagnoses. Give examples of what the child can do and what they enjoy, not just what they can't do. (Avoid using medical terms or abbreviations)

Example:

Don't withhold information about your child.

Example:

Describe how your child's care may impact upon the group of children.

If it takes 45 minutes to feed your child, how would a family caregiver get the job done while keeping the other children safe and happy?

Talk to experienced parents, come to the interview with ideas.

Describe what kind of training the caregiver would need to provide care for your child.

Find out before the interview what kind of on-site support and consultation you will be able to arrange for the caregiver.

When including a child with special needs in a group setting, the caregiver will often need to be doing several things at once. Give the caregiver ideas about how you juggle tasks at home.

Discuss the possibility that if your child is enrolled, other parents may be worried that their own child may get less attention from the caregiver.

Supply "talking points" to the caregiver to address other parents' concerns:

Offer to come and talk with the other parents

Describe how children who spend time with children with special needs learn compassion, patience, appreciation for differences in children and helpfulness at a young age, when lifetime attitudes are formed.

A child that helps another child has his own new skills reinforced.

If other families pull their children out of the program because their children are getting less care, "undue financial burden" (see Americans with Disabilities Act section) becomes an issue for the caregiver.

Show that you understand that your child will be part of a group.

Being with other children usually balances the impact of getting a smaller portion of the adult's time. However, if you or your child are not ready for the group experience, make other child care arrangements until you are.

Qualifications and Training of Caregivers Who Care for Children with Special Needs

Finding a caregiver with specialized training in developmental disabilities, special health needs and/or physical disabilities is desirable. An inexperienced caregiver with a positive attitude and the willingness to learn should not be overlooked.

Find a caregiver that is enthusiastic about his/her career and has a positive attitude. Caregivers that take advantage of professional development opportunities learn how to plan activities that include children with differences.

Parents should always be part of the caregiver training team, but professionals, including child care health consultants, should also train caregivers, particularly when there are special health care needs.

A caregiver needs clear procedures written by the child's health care provider that will allow them to safely care for your child. Procedures should be easily available at the program so that a caregiver can get to them quickly.

Enlisting others to train and support your caregiver

Arrange for an "on-site coach" (like a job coach) who will help your child transition into the new child care program, training the caregiver as situations arise in the first couple of weeks. It could be a grandparent or neighbor, or a paid person who knows the child.

The professionals who serve your child should support the caregiver by:

Holding meetings and training sessions that are convenient for the caregiver to attend (caregivers cannot close down their programs during regular business hours).

Advising caregivers of state regulations that could impact their insurance and liability (such as suctioning a tracheotomy).

Teaching proper techniques to caregivers who will be assisting a child with transfers and lifting. This training will help prevent injury to the caregivers.

Participating in Activities

Children with special needs should participate in all activities as much as possible. They should not spend long periods of time just watching other children play or do projects.

Activities that focus on fun and skill building, and active participation, rather than on having a final product, will be most successful.

Example: A child who does not use scissors can have jack-o-lantern eyes and a mouth cut by another child while s/he gets used to the feeling of finger paste. S/he can paste them on to a paper pumpkin.

The caregiver can help the other children understand that it doesn't matter if the eyes get glued next to the mouth, or on the table. Taking part in the activity, experimenting and being with friends are what matters.

A physical or occupational therapist can help the caregiver adapt games, crafts and activities so that everyone is safe and has a good time.

What impact does the Americans with Disabilities Act (ADA) have on child care for Children with Special Needs?

The ADA says that businesses or agencies serving the public must make their services accessible (usable) to people with disabilities. Child care programs, even family child care homes, are businesses that are covered by the ADA. There are three basic concepts or guidelines in the ADA that apply to child care programs: reasonable accommodations, fundamental alterations of a program and undue financial burden.

What are Reasonable Accommodations?

Businesses are required to make "reasonable accommodations" (changes) that will allow people with disabilities to use their products or services.

The child care program, not the parents, decides what is reasonable after evaluating the child's needs in relation to the program's resources and capacity.

Programs are required to remove barriers that are "readily achievable".

Examples of reasonable accommodations that are "readily achievable" might include:

Modify a center policy "potty trained before moving up to the next class" so that a 6 year child who uses diapers will not be excluded or stuck in a toddler room.

Build ramps to the front door and out to the playground; add grab bars by a toilet

Re-arrange the furniture so that a child who uses a wheelchair can move around freely.

Juggle staff if one member cannot physically perform a care requirement for a child in their group.

Example:

Child care programs can't automatically exclude a child with special needs just because they don't currently have the experience, the staff or the skill to provide care. They need to try to find help, support and the needed training.

A staff member's unwillingness to perform a task (such as diapering an older child) is NOT a valid reason to exclude a child.

What are Fundamental Alterations of a Program?

Accommodations that cause a "Fundamental Alteration of a Program" are not required.

Examples of what a fundamental alteration of a program might look like:

Enrolling a child who requires round the clock care by a nurse and a high level of protection from infections (like colds) would fundamentally alter the nature of the program. Child care is group care of children, not home health or hospital care.

A caregiver should not be expected to drive a child to appointments, therapies, etc.

However, if the parent can arrange for mobile therapists to work with the child on site at the child care program, the caregiver would be expected to adapt activities and schedules so that this could happen.

What is Undue Financial Burden?

Accommodations that cause an "Undue Financial Burden" are not required.

"Undue financial burden" is determined by the business (the child care program).

The bigger the business, the more is expected.

Example:

The caregiver covers the cost when the service is reasonable and necessary for the child to participate in the program.

Example:

A parent may request that a service happen, for the convenience of the family, while the child is in child care. That would not mean that the caregiver should pay for this.

Example:

Because many child care programs are under-funded, adaptations that seem reasonable to parents may well seem like "undue financial burdens" to caregivers.

Example:

For additional information on ADA see:
Commonly Asked Questions About Child Care Centers and the Americans with Disabilities Act (U.S. Department of Justice)
http://www.usdoj.gov/crt/ada/childq%26a.htm

Helpful Resources for Services, Supplies and Funding

Medicaid, including waiver funding (Title XIX).

Private health insurance.

State or federal funds for child care, education, or for Children with Special Health Care Needs(Title V).

Individuals with Disabilities Education Act (IDEA) (particularly Part C or Early Intervention funding).

Community resources (such as volunteers, lending libraries, free equipment available from community based organizations).

Tax incentives (credit and deductions available under federal law to most "for profit" child care programs).

Local Community Development Block Grants and other community grants.

Note: Be creative and innovative! Not all funding is inflexible, even though personnel who oversee spending may prefer to offer a menu of services, rather than options that are customized to individual children and their families. Be assertive (but polite) with the people who make financial and policy decisions.

Example: The bus to your child's public preschool will not deliver him/ her to the child care program because it is located 2 blocks beyond the school district boundary. Find a solution, such as: write it into the IEP or IFSP that maintaining your child's current child care or obtaining specialized services is necessary because your child's special needs have been accommodated in this setting and your child is achieving developmental goals at the program.

Learn the rules. IDEA and other disability funding streams will NOT pay for child care, since this is a usual and customary expense that all young families have. However, it may pay for an "inclusion mentor" or various specialists or therapists to come to your child care program.

Your service coordinator may help you through the hoops to qualify for a subsidy through the child care assistance program.

If your child is a teenager, after school and vacation care may be partially subsidized through funding sources for youth with disabilities. Child care is not a usual and customary expense for teens.

What if the specialized care your child needs is not available in a specific child care program?

Sometimes the child:staff ratios don't meet a child's needs (too many children per caregiver), or the logistics or the physical barriers can't be solved. In these cases, you might want to consider:

Asking an employer for a flexible work schedule so that family and neighbors can help with child care.

Sharing housing with grandparents, or others who can provide child care.

Swapping child care with one other family so that each parent can work half time.

Exploring options for a home based business.

Weighing the necessity of the parent's income against the problems of juggling work and care giving:

Are there ways to cut costs? (There are many costs associated with working: child care, taxes, transportation, clothing, greater use of convenience foods, etc.)

Are there funding sources available to the child that have not been explored because no one had time to do the paperwork?

Would reducing income allow the family to qualify for additional services and resources?

Could a parent train for a different job on-line or at home?

How to help your caregiver with this topic

As your child integrates into the program, remember to check back frequently on concerns and questions that the caregiver may have but doesn't voice.

Remember that your child is in group care - and that other children have needs that require your caregiver's attention too.

If your child receives care in a child care center, and has a formal written plan (IFSP, IEP) one staff member should be designated as the care coordinator (contact person). Offer to reimburse (or find a source for reimbursing) your caregiver for out of pocket costs like mileage, copies, substitutes, etc.

Try to schedule planning sessions that require your caregiver's participation at the child care facility, perhaps during nap time. Finding a substitute so that a caregiver can leave work and attend a meeting is a challenge for most programs, and paying for a substitute is an "undue financial burden" for many programs.

Evening and weekend requests should be kept to a minimum - caregivers are family members, too.

Consider additional compensation for any extra work required. Cash or possibly services in kind such as lawn mowing, automotive care, concert or movie tickets, restaurant certificates, something that helps your caregiver and that they would enjoy.

Communicate clearly and briefly.

Avoid long chats while the caregiver is working with other children and parents.

A notebook that's passed back and forth in the diaper bag is a good tool for this.

State what you'd like to have changed and how the caregiver might make that happen.

Help your caregiver get the appropriate information they need from your child's health care provider. This includes written authorization and your help in contacting the health provider's office.

Make sure that important information is shared with the caregiver as changes occur.

For benefits of having diverse populations in child care programs, please see Respecting Differences Section.

Additional Resources

Materials

Commonly Asked Questions About Child Care Centers and the Americans with Disabilities Act (U.S. Department of Justice)
http://www.usdoj.gov/crt/ada/childq%26a.htm

Child Care Plus+ (Training, tips and help for caregivers)
http://www.ccplus.org/BackIssues.html

Child Care and the Americans with Disabilities Act: Opportunities and Resources for Child Care Providers and Families (Washington State Department of Health Children with Special Health Care Needs Program)
http://cshcn.org/childcare-schools-community/child-care-and-ada

Organizations That Can Help Parents and Caregivers find Needed Resources

http://www.thearc.org/

http://www.childcareaware.org

http://www.familyvoices.org/

http://www.nichcy.org/

http://www.nectac.org/default.asp

https://perfdata.hrsa.gov/mchb/mchreports/link/state_links.asp

http://www.cms.hhs.gov/medicaid/allStateContacts.asp

Healthy Kids, Healthy Care is based on Caring for Our Children: National Health and Safety Performance Standards: Guidelines for Out-of-Home Child Care Programs, 2nd Edition, 2002, (American Academy of Pediatrics, American Public Health Association, and National Resource Center for Health and Safety in Child Care)

STANDARD 1.003 RATIOS FOR FACILITIES SERVING CHILDREN WITH SPECIAL HEALTH NEEDS
STANDARD 1.009 PRESERVICE AND ONGOING STAFF TRAINING
STANDARD 1.014 GENERAL QUALIFICATIONS OF DIRECTORS
STANDARD 1.017 QUALIFICATIONS OF EDUCATIONAL COORDINATORS, LEAD TEACHERS, AND TEACHERS
STANDARD 1.019 GENERAL QUALIFICATIONS OF FAMILY CHILD CARE CAREGIVERS
STANDARD 1.024 ORIENTATION FOR CARE OF CHILDREN WITH SPECIAL HEALTH NEEDS
STANDARD 1.029 CONTINUING EDUCATION FOR DIRECTORS AND CAREGIVERS IN CENTERS AND LARGE FAMILY CHILD CARE HOMES
STANDARD 1.030 CONTINUING EDUCATION FOR SMALL FAMILY CHILD CARE HOME PROVIDERS
STANDARD 1.040 USE OF CHILD CARE HEALTH CONSULTANTS
STANDARD 1.042 SPECIALIZED CONSULTATION FOR FACILITIES SERVING CHILDREN WITH DISABILITIES
STANDARD 2.002 PROGRAM OF ACTIVITIES INCLUDING SPECIAL INTERVENTIONS
STANDARD 2.050 SEEKING PARENT INPUT
STANDARD 2.058 ON-SITE SERVICES FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS
STANDARD 2.059 COMMUNICATION FROM SPECIALISTS
STANDARD 3.063 CARING FOR CHILDREN WHO REQUIRE MEDICAL PROCEDURES
STANDARD 3.081 PERMISSIBLE ADMINISTRATION OF MEDICATION
STANDARD 3.083 TRAINING OF CAREGIVERS TO ADMINISTER MEDICATION
STANDARD 4.007 DIETARY MODIFICATIONS
STANDARD 4.009 FEEDING PLANS
STANDARD 5.004 ACCESSIBILITY OF FACILITY
STANDARD 5.021 EVACUATION OF CHILDREN WITH DISABILITIES
STANDARD 5.022 PATH OF EGRESS
STANDARD 5.097 THERAPEUTIC AND RECREATIONAL EQUIPMENT
STANDARD 5.098 SPECIAL ADAPTIVE EQUIPMENT
STANDARD 5.099 PROSTHETIC DEVICES
STANDARD 5.112 SPACE REQUIRED PER CHILD
STANDARD 5.150 SPACE FOR THERAPY SERVICES
STANDARD 5.152 STORAGE FOR ADAPTIVE EQUIPMENT
STANDARD 5.187 PLAY EQUIPMENT FOR CHILDREN WITH DISABILITIES
STANDARD 7.001 INCLUSION IN ALL ACTIVITIES
STANDARD 7.002 PLANNING FOR INCLUSION
STANDARD 7.003 INITIAL ASSESSMENT
STANDARD 7.004 DETERMINING THE TYPE AND FREQUENCY OF SERVICES
STANDARD 7.007 DESIGNATION AND ROLE OF STAFF PERSON RESPONSIBLE FOR COORDINATING CARE
STANDARD 7.009 CONTRACTS AND REIMBURSEMENTS
STANDARD 8.005 INITIAL PROVISION OF WRITTEN INFORMATION TO PARENTS AND CAREGIVERS
STANDARD 8.006 NONDISCRIMINATION POLICY
STANDARD 8.015 IDENTIFICATION OF CHILD'S MEDICAL HOME AND PARENTAL CONSENT FOR INFORMATION EXCHANGE
STANDARD 8.016 INFORMATION SHARING ON THERAPIES AND TREATMENTS NEEDED

Disclaimer: Healthy Kids, Healthy Care is for reference purposes only and shall not be used as a substitute for medical consultation, nor be used to authorize actions beyond a person's licensing, training, or ability.