Children's Voice Article, September/October 2002
Serving children with disABILITIES
Second of Two articles (Part One)
By Kelly Mack and Steve Boehm
Children with disabilities encounter challenges in all areas of daily life, struggling against low expectations and inaccessibility. And all aspects of child welfare--adoption, foster care, housing, juvenile justice, and other programs--touch the lives of children with disabilities.
Child welfare workers are increasingly aware of children with disabilities and how to address their needs, whether they be affordable housing, health care, help transitioning to adulthood and independence or a loving family in which to grow up. For those who care for, work with, or are concerned about children and youth with disabilities, the challenge is not curing their disabilities but rather incorporating their differences and talents into society so they can participate and lead healthy, happy lives.
Special Needs of Children-and Parents
In foster care and adoption, and throughout the field of child welfare, special needs describes not only children who have disabilities, but also older children, children belonging to nonwhite racial groups, sibling groups who need to be placed together, and children who have other needs additional to those of their peers.
Most children in the foster care system and those awaiting adoption fall into the special-needs category. "Any child removed from their home is going to have an emotional problem, so we consider them all special needs," says Karen Jorgenson of the National Foster Parent Association (NFPA). According to her, as many as 98% of children in the foster care system have disabilities.
Most foster parents of children with disabilities receive training to be prepared for medical and other needs of children in their care. Other supports may be scarce for foster and adoptive parents who are caring for children with disabilities, but organizations like NFPA and the National Council on Adoptable Children can be resources for these families.
One support that is on the rise is respite and crisis care, allowing parents to take time off to rest and recuperate from the stresses of parenting children with disabilities. Designed to support family stability, prevent future problems such as abuse and neglect, and avoid out-of-home placements and hospitalizations, such programs have proven to be critical in caring for children with disabilities. [See "Care for the Caregivers," Children's Voice, May 2002.]
Adoptive parents, who usually adopt a child with a disability they've had in foster care, have access to state and federal adoption subsidies and assistance programs. The Adoption Assistance and Child Welfare Act of 1980 (P.L. 96-272) required states to establish an adoption subsidy program and provided federal dollars to be used as part of the state's adoption subsidies for children adopted from foster care. Federal funding totaled $1.4 billion in 2002. In 1986, Congress amended the law to require states to reimburse adoptive parents for nonrecurring expenses incurred in adopting a child with special needs.
Parents who adopt special-needs children can also benefit from the federal tax credit for adoption-related expenses. In 2001, Congress increased the adoption tax credit to $10,000, beginning with the 2002 tax year. Before, the credit had been up to $6,000 for a special-needs child. Beginning in 2003, the $10,000 credit applies regardless of expenses for special-needs adoptions. The credit is phased out for higher-income families, starting with adjusted gross incomes of $75,000, and is phased out completely when family income reaches $150,000. Income from employer-provided adoption assistance programs is excluded.
The Education Gauntlet
Jorgenson says one of the greatest priorities for parents of children with disabilities should be to develop strong relationships with their schools. Children with disabilities often qualify for educational assistance or vocational training opportunities that will help them transition to independent living at adulthood. She warns, however, that navigating local school systems and other agencies that provide such services, getting them to cooperate with each other, and receiving services to which children with disabilities may be entitled is time consuming and often frustrating.
The Individuals with Disabilities Education Act (IDEA) mandates that all children and youth with disabilities are entitled to a "free and appropriate public education." The law determines services that schools must provide to children with disabilities, including infants and toddlers, and mandates minimum requirements that states must meet. Some states have also enacted their own special education laws that may go further.
Despite these mandates, the National Council on Disability says that all 50 states and the District of Columbia are failing to comply with major portions of IDEA. Thus, although children with disabilities may be entitled to services and accommodations from their local school systems, few parents understand the law well enough to know that their foster or adoptive children may be entitled to more than they are receiving. For example, they may not know the school system has to pay for required testing to gauge the child's disability and needs, or that federal law can force the local public school system to pay for a private education if the child does not progress on the education goals in his or her individual education plan (IEP). [See "Getting the Most Out of Special Education," Children's Voice, May 2001.]
Negotiating with school officials over the child's goals and IEP can be daunting, intimidating, and exhausting. Many times, parents have to retain a professional special-education advocate or attorney and resort to lengthy and costly litigation. Even then, they seldom know that, should they prevail, the school system could be ordered to pay their legal costs. The best weapon parents have at their disposal is educating themselves about their rights under federal disability law.
Hope for federal strengthening of IDEA is on the horizon. In July, President Bush's Commission on Excellence in Special Education released its report, A New Era: Revitalizing Special Education for Children and Their Families. Although the report's coverage of IDEA is broad, it argues for continued work on improving education for children with disabilities and for better implementation of IDEA. During the next year, Congress will be considering reauthorization of IDEA, and many parents and advocates will be concerned with making substantive changes, improving enforcement, and increasing funding for implementing the law. Congress has never fully funded IDEA, and many congressional supporters are seeking mandatory funding to at least ensure a baseline appropriation for the next five years.
Under One Roof
Finding affordable housing can be an enormous challenge to reuniting or maintaining a family. Children with disabilities may have the additional need of an accessible home or one specially equipped with modifications such as ramps or wider doors. The expense of such modifications may push accessible housing further out of reach for these families. Something as basic as housing, therefore, can be the deciding factor in a child coming home or finding a new home.
One program that addresses such needs is New Jersey's Home Ownership for Permanency Project (HOPP), recognized by the U.S. Department of Housing and Urban Development as one of the 100 Best Practices in housing. HOPP is a partnership between the New Jersey Housing and Mortgage Finance Agency and the state Human Services' Division of Youth and Family Services. It provides below-market mortgages for low- and moderate-income adoptive parents and relative caregivers who have been previously unable to adopt because of housing difficulties. Funds are also available for families who already have a home but need to make accommodations after adopting a new child.
Targeted to special-needs children--particularly medically fragile children and sibling groups at risk of being separated--during the last year, HOPP has helped 150 families of special-needs children apply for housing; 51 have received $6.9 million in mortgages.
Many children with disabilities spend time in corrections. Depending on the jurisdiction, as many as 70% of the children in correctional facilities could have some disability, according to the National Center for Education, Disability, and Juvenile Justice (NCEDJ). In many cases, these children do not receive the help and education to which they are entitled. Children with disabilities who cycle through the juvenile justice system, therefore, frequently remain uneducated and illiterate, and often are not treated for emotional and physical problems.
For three years, NCEDJ has worked as a pioneer at the intersection of disability and juvenile justice. Director Peter Leone previously worked as an educator and saw a pressing need for education and advocacy for children with disabilities in corrections.
Leone and Associate Director Sheri Meisel explain that determining the prevalence of children with disabilities in corrections is difficult and depends on how well facilities evaluate the children. Some facilities estimate prevalence at 20%-25% of their populations; others range as high as 70-90%.
"There are some very good correctional education programs, but many are quite inadequate," Meisel says, explaining that some "don't identify all of the youth who come through the facilities. They don't know, so they aren't reporting them."
NCEDJ says facilities that serve disabled children well tend to report a high prevalence because they have thoroughly evaluated the children and are providing appropriate services. "The kids who typically fair the worst in the system are the kids with disabling conditions," Leone says.
Most disabled youth in the juvenile justice system have emotional, behavioral, or learning disabilities. In many cases these disabilities were identified in school, but locating and transferring their records to correctional facilities is often difficult, if not impossible-either the correctional facilities don't know what schools to contact for specific youth, or school systems are reluctant to forward student records to another party. If the correctional facilities themselves don't adequately evaluate the youth, their needs may go unidentified. Another challenge is funding for support and education of children with disabilities. "In spite of the importance of education, and in spite of federal mandates, many youth in juvenile correction settings don't receive services to which they are entitled," Leone says.
Leone argues the fundamental problem is in not recognizing that children in corrections need help, that incarceration doesn't resolve their educational or behavioral problems. "The most significant barriers are conceptual, barriers in our own heads, about what we think kids are entitled to. Figuring out the ways and mechanisms to support kids is easier than getting over some of the attitudes we have about kids not being deserving" of services and education.
Many programs concentrate on issues affecting children with disabilities. New Alternatives for Children (NAC) in New York City, however, approaches these problems individually. NAC specializes in serving children with disabilities, supporting medically fragile children and children transitioning from lengthy hospital stays to living in a home. "We have a philosophy," says Executive Director Elizabeth Goldsmith, "to open doors, open possibilities, and that these children
can do anything their hearts and minds set out to do."
When NAC began in 1982, children with disabilities might spend years in the hospital, and few agencies were working to reunite them with their families or place them in foster care or adoptive homes, or to preserve families and help them care for their children with disabilities. NAC began moving children out of hospitals through foster care, adoption, or reunification with their birthfamilies.
The organization soon added postadoption and prevention programs to help families cope with crises and the difficulties of disability. NAC's postadoption services today help some 75 families with children with mental health problems and physical disabilities. NAC has also added a postprevention component for families who need less intensive step-down services, such as recreation, education, or transportation.
Through NAC's system of continuous care, children and families remain connected with the same medical team as the children age and while they move through different programs. "Sometimes
a child gets orthopedics one place and [another service] some place else," Goldsmith says. "We try to coordinate the care so we avoid fragmentation of services and they get everything in one place."
Serving 400 children a year, NAC has helped about 400 children with foster care, arranged 120 adoptions, and reunited more than 100 children with their families. "These kids have been in hospitals anywhere from one year, two years, up to eight years," Goldsmith says. One boy, who uses a wheelchair because of cerebral palsy, spent eight years in hospital settings before NAC found him an adoptive home. He was eventually named valedictorian of his high school graduating class and received a full scholarship to Hofstra University.
NAC runs 34 groups for children, from karaoke to pottery, from tutoring to special support groups, such as a group for children with spina bifida. Other programs, such as a food bank, a clothing bank, and cash assistance programs, focus on supporting parents. Through its holistic approach, NAC helps the families of disabled and medically fragile children navigate every facet of their lives, tailoring solutions to each child and family's specific needs so that behavioral, medical, education, housing, and family reunification and maintenance problems can be addressed.
Awareness and Opportunities
Agencies and individuals who work with children and youth are becoming more aware of the specific concerns of children with disabilities and their families, targeting children's needs and addressing family challenges. Strides in foster care, adoption, housing, and juvenile justice are providing more opportunities for these children to grow and participate in society. The programs and ideas offered in this series are just a brief list of examples in caring for children with disabilities, allowing them to grow up happy, healthy, and productive.
Kelly Mack is an Associate Editor with CWLA. Steve Boehm is Editor in Chief of Children's Voice and Assistant Director of Publications for CWLA.
The first article in this two-part series discussed federal legislation, education, advocacy, and other work geared toward helping children with disabilities, as well as organizations and programs working to raise expectations about what these children can accomplish. See Children's Voice, July 2002.
IDEA and IEPs: Internet Resources
Families and Advocates Partnership for Education
8161 Normandale Blvd
Minneapolis MN 55437-1044
FAPE educates families and advocates about IDEA and promising practices.
Guide to the Individualized Education Program
Office of Special Education Programs
U.S. Department of Education
Rights and Responsibilities of Parents of Children with Disabilities
Online resource for parents, advocates, educators, and attorneys about effective advocacy for children with disabilities.
Information and resources on IDEA
National Information Center for Children and Youth with Disabilities
Links for children and families about IEPs and IDEA
Resources for Children with Disabilities and Their Families
University of Wisconsin-Madison
1500 Highland Avenue
Madison WI 53705-2280
Online community of disability-related resources.
National Center on Education, Disability, and Juvenile Justice
University of Maryland
1224 Benjamin Building
College Park MD 20742
National Foster Parent Association
7512 Stanich Avenue, #6
Gig Harbor WA 98335
800/557-5238 or 253/853-4000
New Alternatives for Children
37 West 26th Street
New York NY 10010
New Jersey Housing and Mortgage
637 South Clinton Avenue
PO Box 18550
Trenton NJ 08650-2085
800/NJ-HOUSE or 609/278-7400
North American Council on Adoptable Children
970 Raymond Avenue, Suite 106
St. Paul MN 55114
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