Who is Fighting for You?
The long road home, by Gale Jurasek
Brenda Hull, who lives in Greater Dane County, Wisconsin, had problems finding daycare for her son, Jacob. Jacob has cerebral palsy, cognitive delays, and a seizure disorder. She knew how important it was for him to have social contact with children his own age, and when he was 2, Jacob attended a “highly recommended childcare program” for a few hours each day.
“I was shocked to hear that they would not allow him to be with the other 2-year-olds because, after all, he wasn’t yet walking or talking,” says MS. Hull. “Thinking that after they got to know him they would change their minds, I still enrolled him.”
Jacob spent his days in a swing in the infant room, and when the director of the program continued to refuse to allow Jacob to be with his peers, MS. Hull took him out of the program. Says MS. Hull, “They never knew what they missed.”
Several months later, Jacob was enrolled in an early childhood program. Brenda went in and observed him on his second day there. “He sat in a circle and when it was time to put his name on the board, he did it. He needed help, but he was doing the same things as the other children. He was happy and excited to be there.”
That particular program was, MS. Hull admits, an exceptional one in that not only did the teachers have a great deal of experience, but occupational, physical, and speech therapies were all available. She is certain that the positive experience he had so early in life profoundly impacted who he is today-a very social 10-year-old.
Currently, MS. Hull serves as program director of the Extended Day Care Program, part of United Cerebral Palsy of Greater Dane County, Wisconsin. The Extended Day Care Program works to include children with disabilities in daycare programs throughout the county. Support staff are provided for children who require one-on-one care, and personal consultations and workshops are offered for childcare providers to help them include all children.
According to MS. Hull, the Program “works well, but the need is great. Over 65 families at any time are currently waiting for services.” To help spotlight the need for better legislation, she has been collecting parents’ daycare experiences, both good and bad. MS. Hull is working to build awareness of the child care needs of families who have a child with a disability.
Never quite enough
Some families are fortunate enough to find a good program for their child, but usually not without going through what MS. Hull went through. Some, like Carrie Pomije, never find a truly ideal situation.
MS. Pomije’s son, Owen, has autism, and she remembers that “finding childcare for Owen was next to impossible.” As an infant, Owen would scream continuously unless he was held. MS. Pomije tried three different baby sitters who cared for children in their own home, but none of them was able to give Owen the time and attention he needed. It was then that she decided to try a larger daycare.
Owen was at the first daycare for over a year. During that time, MS. Pomije was frequently called to come and get him because of his behavior. The daycare center told her that Owen, at 18 months of age, was “spoiled and manipulative.” According to MS. Pomije, Owen had a lot of sensory issues, including a very strong gag reflex. This caused Owen to vomit frequently, especially when crying or coughing.
One day she was told by a worker at the daycare center, “Owen vomits on purpose to make me mad, and today I made him sit in it for a little while!” MS. Pomije moved Owen from the setting. She found a much more inclusive program where he flourished until the program shut down due to loss of funding.
By this time Owen was 4, and had severe behavioral issues. Most places that MS. Pomije tried had openings for 4-year-olds until they found out that Owen had autism. After she threatened one center with legal action for violating the ADA, they agreed to take him, but stated that he would have to stay in the infant room because of his toileting needs. Although they were told that this was developmentally inappropriate, the center’s response was, “Take it or leave it.”
MS. Pomije finally found a daycare that would accept him, provided he had one-on-one assistance at all time. She says it was not a facility she would have chosen. “Instead of a place of nurturing and learning, it was more like a warehouse that kept him safe.”
Owen currently attends school with direct one-on-one support, which he gets from the Extended Day Care Program. MS. Pomije says that although she is satisfied with his care right now, she is “very concerned as to what the future will bring when he transitions to middle school in a couple of years.” She adds, “I can only be happy that he is cared for properly at this time.”
The damage that is done
MS. Pomije’s story is similar to the others collected by Brenda Hull. She has found that many parents have to quit their jobs to stay home with their child, and when this happens, notes MS. Hull, “A productive worker and taxpayer is lost, families lose much-needed income, adults become less accepting, and the child is lonely.”
Research conducted by the Florida Children’s Forum/Florida Directory of Early Childhood Services bears this out. The Children’s Forum and Florida’s Statewide Inclusion Advisory Council conducted a survey of families and focus groups in Florida to identify needs within the service delivery system.
Of the 77 families responding to the survey, 75 percent were unemployed due to lack of childcare. Twenty-one percent were frequently working less-skilled positions or part-time due to childcare needs. Many respondents indicated that work is often “seasonal” because of lack of childcare in the summer, school vacations, and afternoon childcare. Four percent of families had decided not to pursue employment because it was “too much” or “too difficult” because of their child’s special healthcare needs.
The majority of care that families had was provided by family members or a relative. Often a sibling had to be with the child with a disability to interpret for or care for the child. Families talked about the negative implications of this upon their relationship.
The Florida Children’s Forum received a grant from the Florida Developmental Disabilities Council to support implementation of the process for the Five-Year Inclusive Child Care Strategic Plan. The plan was developed to provide access, availability, and quality of childcare services to families with children and young adults with disabilities and special health care needs. The results of this survey and other data are being used for advocacy and education in the state of Florida.
Map to Inclusive Childcare
The Children’s Forum was developed as part of the Map to Inclusive Childcare project. The Map is a three-year project funded by the Child Care Bureau, US Department of Health and Human Services. To date, 31 states have participated, and the Map project is currently seeking funding to bring the rest of the country into the program.
How the Map Project works
Each year, states are chosen using selection criteria that ensure a diverse state team membership. Each state team consists of members from the following categories:
- Parent of a child with a disability.
- State administrators from childcare agencies.
- Early childhood/childcare/school-age providers.
- Policy makers/legislators.
- Representatives from Head Start/Early Head Start.
- Agencies or organizations that provide services to children with disabilities.
- Educational institutions involved in pre-service/ inservice cooperative extension systems.
- Other related sectors.
The states and their teams are provided with technical assistance to support the development of a successful inclusive childcare system within their state. The underlying premise of this project is to develop quality childcare that will benefit all children.
Each of the states holds a State Strategic Planning Meeting to identify barriers to inclusive childcare and resources available for promotion of inclusive childcare. During this two-day planning meeting, each state also devises its own vision and mission statements.
Each year, a National Institute is convened in Washington, D.C. All team members from the current year attend. The Institute provides an opportunity for state teams and key stakeholders to benefit from each other’s experiences in promoting the inclusion of children with disabilities.
To learn more about the Map to Inclusive Childcare Project, and for information on your state’s participation, you can visit their Web site at: http://childandfamily.uchc.edu/map/map.html
Doing the right thing
How do parents even approach the subject of finding daycare for a child with a disability? According to Susan Maxwell, executive director of the Georgia Child Care Council, “Including special needs children has to start at the top. Parents with special needs children should look for a director who is open and supportive of incorporating special needs into the regular curriculum.”
Speaking to the director first is a good idea, because that is who parents will end up dealing with. Directors are the ones who will ultimately make the decision about your child. “You really need a director who sees it as an opportunity and not a challenge to include special needs children,” says MS. Maxwell. “It is important that the director set the tone for the staff, because if they think the director is hesitant about it, then the teachers will become hesitant as well.”
Paula Boykin is director of Family & Children’s Services, Abilities Network, in Maryland, part of Project ACT (All Children Together), a non-profit organization providing on-site assistance, mentoring, and training to childcare providers. She emphasizes that a common thread exists, which might make the hunt for inclusive childcare easier. “In general, good childcare is good childcare,” says MS. Boykin. “It has been our experience that good childcare centers are willing and open to the supports from outside. If they have a strong foundation, then these centers will be much more open to caring or learning to care for a child with special needs.” She adds that the skills needed to care for children with special needs are the same skills that the providers very likely already have.
She also suggests that parents try the following:
- Schedule a visit to the center.
- Obtain a copy of policies and procedures, including curriculum.
- Ask if they have an opening for a, for example, 4-year-old child. DO NOT SAY, “I HAVE A 4-YEAR-OLD WITH AUTISM…” According to MS. Boykin, “If the general public hears the labels first, they think of the worst-case scenario. Present the child first, not the disability.”
Once your child has been accepted into a childcare center, MS. Boykin says that a good “recipe for success” includes parents as a prime ingredient. She advises parents to:
- Look at building a partnership with the childcare providers.
- Keep the lines of communication open.
- Stay involved and help out-perhaps by arriving a little early if the child needs extra time to get settled.
- If the child is getting services from other resources (e.g., therapy, early intervention) the parents can be a conduit between systems. A main issue, says MS. Boykin, “Is getting all of the adults on the same page.” She speaks from experience, noting that with proper supports and an open relationship between parents and childcare providers, the experience can be a positive one. She notes that “89 percent of kids who started out in inclusive childcare with our supports are still in an inclusive childcare program of some kind.”
Early Intervention of Pennsylvania has recently begun publishing a newsletter, “Early Intervention-Inclusive Childcare- A Place for All Children.” Kathy Brill, the chairperson of the State Interagency Coordinating Council, states, “When your child has a disability, additional factors become important as families search for appropriate childcare.” She notes that staff training, attitude, and appropriate accessibility as well as other specialized accommodations are at the top of the list.
There is a need, she says, for “ensuring that all childcare providers have appropriate access to these supports,” and that “all childcare programs and services should be responsive to children and family needs, including the great diversity and differences among families and their children, whether it be disability or cultural differences.”
The State Interagency Coordinating Council’s annual plan includes a subcommittee to specifically focus on childcare issues. MS. Brill mentions the value of input from all parties involved: “Insights from families and childcare providers, as to the realities faced when childcare services are sought or accessed, allow us to advise on new and improved policies and technical assistance, and identify other ways to support children with special needs in childcare settings.”
As part of the effort in Pennsylvania, The Pennsylvania Early Intervention Newsletter asked for parent stories. In part two of an article that began in the Summer issue, “A Place for All Children-Strategies from Families,” parent Barbara Rogers shares some advice for other families in their search for inclusive child care:
Look at your child objectively. Think about what his or her needs are as an integral part of your family and your experience as a parent.
- Make a checklist.
- Pick the program that most closely offers/matches your checklist (make one).
- Find a program that recognizes more than just legal responsibility-people who are sensitive or have some understanding of working with children with special needs. Observe how they talk to the children and how they meet the needs of each child.
- Work hard to add or adjust the environment to make it ideal! Know the resources that exist in your community such as early intervention supports through the intermediate-unit or infant/toddler programs. Be willing to educate and communicate with the program on a regular basis, rather than having problems simmer and grow. (For more information about The Pennsylvania Early Intervention Newsletter, you can call them at [717] 731-7215.)
Suzanne Ripley is the mother of two sons who have multiple disabilities and the director of the National Information Center for Children and Youth with Disabilities (NICHCY). In her search for childcare, she found it necessary to exhaust every resource at hand to find someplace that truly wanted to include her sons. “No one wants their son or daughter in a facility that doesn’t really welcome the child,” says MS. Ripley. “When I was looking for childcare for my sons, my number one method was to ask other parents.” She advises “Don’t limit your search for information to organizations directly related to your child’s disability. Contact parent support organizations and those that serve other disabilities as well.” She notes that state or county offices that provide services to children, youth, and families usually maintain lists of information about childcare programs at the local level.
The big picture
Although Brenda Hull is working in Wisconsin, she notes that the unwillingness to provide daycare to children with disabilities occurs nationwide. This is taking place “not because these people are bad, it’s because people have not experienced the joy of having a child with special needs in their program or how children with behavioral issues can be supported well, and it makes all the difference.” Kathy Brill observes, “We have a long way to go, but we are on the right track.”
