By Kelly Henderson, Ph.D.
Like summer and popsicles, some things just go together. Foster care and special needs are interwoven. While many children and youth in foster care develop at a typical pace and achieve academic, social and behavioral outcomes like their peers, this population is disproportionately impacted by delays, disabilities and other special needs.
Who has Special Needs?
Children in foster care are more likely than their peers to have disabilities, be persons of color and experience multiple placements — all risk factors for poor educational, developmental and transition outcomes. Prevalence rates for children in foster care who are eligible to receive special education range from 30% to 80%; however, disabilities of students in foster care are often not identified accurately or in a timely manner, according to several studies in the last decade.
The very conditions that bring a child into the care of a non-birth parent increase risk of disability. For example, in one large study of children referred for maltreatment, adopted and foster children were significantly more likely to have special health care needs than children never placed out of the home, according to the 2009 Pediatrics article “Special health care needs among children in the child welfare system.” Many children with disabilities in formed families are under-identified, misidentified and underserved for their special educational needs. And those children in care who are identified as eligible for special education and related services are served in more restrictive placements and are disciplined and drop out of high school more frequently, according to several studies in the last decade. High school graduation rates for youth in the foster care system are poor and even lower for students with disabilities, according to research published by Chapin Hall in 2004, and the effects last into adulthood.
What Helps?
Long-term outcomes for youth in foster care with disabilities are poor, but high-quality programming and family participation and advocacy can lessen the impact of many risk factors. Foster families are often underprepared and lack tools to be the best advocates they can for the children in their care. The very social services, medical and education systems that rely on foster and kin families to raise children and youth with specialized needs often fail to prepare and support them. A 2015 study published in Clinical Pediatrics examined parents’ experiences and reported:
“Many participants voiced a belief that they were fighting on behalf of these children and seemed at odds with Children’s Services and the health care system. Many took it on themselves to investigate the child’s suspected psychosocial and medical health history unknowns and to secure needed health care, education, and therapies. Relying exclusively on individual foster caregivers to be proactive for medical care is a flaw in the system.”
As many foster families have found in other systems, knowledge is key. Foster families raising children and youth with disabilities need to be familiar with options for securing appropriate educational services and supports necessary for strong academic, behavioral and social-emotional outcomes.
Before a child is considered for special education eligibility, schools and families may review records, collect new information and plan different interventions to see if small group or individualized help might improve things for the student. Some children and youth may not require specialized instruction but rather need accommodations, such as extended time on tests or frequent breaks. In that case, the team may initiate an evaluation for eligibility under Section 504 of the Rehabilitation Act and draft a “504 plan” that lays out supports that help even the playing field for the child at school. If the child’s needs go beyond what these approaches can offer, then special education may be appropriate.
What is Special Education?
In the U.S., any eligible child with a disability age 3 through at least 21 has the right and opportunity to receive specialized instruction and other related services through the schools. Note that our main focus here will be the education of children in preschool through high school. Services and supports for infants and toddlers with developmental delays and disabilities and their families must be available through a public agency such as the health, education, mental health or other service system, specific to your locality and state. Your state’s “lead” agency can be found at https://bit.ly/3ulsVAB.
Children and youth with special needs who, as a result of their disability, require specially-designed instruction to address their unique needs and ensure their access to curriculum have a federal right to a free, appropriate public education. This stems from the federal Individuals with Disabilities Education Act (IDEA), originally passed into law in 1975. This federal law and regulations, and the implementing procedures and regulations in each state, guide how the referral, evaluation, eligibility for services, planning and implementing of special education and related services, and determination of accommodations and placement all happen. Whether your child is being considered, or is already eligible, for special education, get a copy of your state regulations as well as a copy of a required “procedural safeguards notice.”
How to Access Services
The special education process can be cyclical and starts with a referral made to the local school district. School district forms may be available online; your school principal can also direct you to the correct forms and information. Teachers and others who work with a child who is suspected of having a disability may also make a referral.
In your community, a team may conduct screening to review information presented in the referral to determine if the situation merits further assessment. Screening may involve collecting information from you, teachers and child care providers. It will be important to share any medical information regarding your child’s prenatal and early health history.
Once the screening reveals there is reason for concern about a disability, formal evaluation of your child begins. The purpose of this evaluation is to collect information about your child to determine if she meets the criteria of having a specific disability. The evaluation involves several steps. First, the team reviews existing information about your child. These might include information from foster and birth parents, the child’s teachers and other caregivers, medical professionals, therapists familiar with your child and existing assessments and observations from the child’s classroom. It is very important to share any information about your child’s development and past performance you have from private sources, such as speech and hearing evaluations and reports from your child’s preschool teachers, if applicable.
Next, if additional information is needed, the team will direct appropriate personnel to collect that information, usually at no cost to the family. Evaluation may include an assessment of your child’s cognitive ability, achievement, speech, audiology, motor, behavioral and social-emotional functioning. All assessments must be reliable, nondiscriminatory on a racial and cultural basis and administered in the child’s native language. Information from these assessments is often critical to the process of identifying a child as eligible to receive services. Parents must give consent, and typically the evaluation must be conducted within 60 days.
The evaluation results are then reviewed and a decision is made if the child meets the eligibility criteria for a particular category, such as specific learning disability, speech or language impairment or developmental delay. Information collected previously and from teachers and parents must also be considered, as well as background information about your child’s social or cultural background.
Professionals who know your child and who can interpret evaluation results participate in the eligibility meeting. Usually, the child’s current teacher; a school or program administrator; a school psychologist or someone else familiar with the testing; or other specialists such as occupational therapists, behavior specialists or speech language pathologists participate in making this important determination.
If your child is eligible, the school will initiate an IEP to implement individualized services for your child. Parents are key participants and partners in the development and at least annual review of the IEP. Schools must provide periodic written reports on your child’s progress toward the IEP goals. Monitoring of the progress your child is making toward IEP goals is a shared responsibility; parents may convene an IEP meeting mid-year if instructional services, supports and accommodations in the IEP are not being implemented or if circumstances in your child’s life have changed in a way that could impact his or her IEP goals, related services and other educational needs.
What Should Foster Families Know and Do?
First, become very familiar with your state’s special education regulations and local special education guidance including the procedural safeguards notice and other family handbooks or guides. Often well-intentioned school personnel and social service agency staff misunderstand or base their actions on past experiences which may or may not be consistent with requirements.
Second, it is critical that foster or resource parents understand who is acting as the educational decisionmaker for a child in foster care. The federal definition of “parent” under IDEA names the biological or adoptive parent of the child first, but recognizes that a foster parent can serve in this role. Generally, states and localities recognize that if parental rights have been terminated or the biological or adoptive parent is unable or unwilling to serve, the foster parent acts as decisionmaker and should participate as parent in evaluation and IEP team meetings. A judicial decree or order can result in a change of who serves as “parent” in individual circumstances.
Third, when the school evaluates or reevaluates a child for eligibility or is updating statements of the child’s present level of performance in the IEP, family input may be critical. For children who have lived with other families and in other settings, this background information will be particularly important to consider. Trauma, for example, can have a significant impact on a child’s school performance, and it may be important to document relevant facts. Older youth should also have an active role in deciding what to share and should participate in IEP and other team meetings.
Finally, reach out to others who have walked this path. Every state has at least one federally-funded special education parent information and training center that can help families and youth through the special education process and assist when disagreements arise. Find your center at https://www.parentcenterhub.org/find-your-center/.
A Snapshot of Educational Challenges
- 14% of children in the U.S. live in homes headed by foster adoptive or kinship caregivers, according to the 2019 U.S. Census; in an average general education classroom, at least three students are in homes with caregivers who are not their birth or stepparents.
- Research confirms these children and youth are at least three to four times more likely than their peers to have disabilities and special health care needs, which require early intervention and special education. Disability prevalence rates range from 30-60% of children in care.
- 2021 data from two public foster care agencies in Virginia confirm the disproportional impact of special needs on foster families. One jurisdiction found that 34% of school-age children and youth currently in foster care have current Individualized Education Programs (IEPs) and another 6% have 504 plans for disability accommodations. Sixty-four percent of foster children have diagnosed mental health conditions and 18% have chronic health conditions. In another jurisdiction, fully 50% of children and youth in foster care who attend school have IEPs.
Avenues to Educational Supports
- Informal communication and collaboration between school staff and family
- Team-based review of data and problem solving, including small group and individualized interventions (sometimes called multi-tiered approaches)
- Accommodations and other supports for eligible children with physical or mental impairments that substantially limit major life activities, such as learning, guided by a 504 plan
- Specialized instruction and related services, guided by an Individualized Education Program (IEP)
The Special Education Cycle
- Referral
- Evaluation and Eligibility
- Individualized Education Program development
- Instruction and Delivery of Services & Supports
- Ongoing Monitoring
- Reevaluation
Kelly Henderson is executive director of Formed Families Forward, a family-led resource center offering free training, consultations, resources and other supports for foster, adoptive and kinship families raising children and youth with disabilities and other special needs. She is mom to three teen and young adult sons who joined the family through foster care, adoption and birth, and all of whom have special needs. Henderson is a professional special educator, and has taught in public schools and has worked in nonprofit and federal education research settings. She earned a doctorate in special education with a focus on behavioral disorders from the University of Maryland College Park and has served as adjunct faculty at George Mason University, Fairfax, Va.
NOTE: Research citations for data reported here are available upon request from the author at [email protected].
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