Getting help for children with complex needs
Many children with intellectual or developmental disabilities (I/DD) also have mental health disorders. Studies show that more than two-thirds of children with autism have been diagnosed with one or more psychiatric disorders, such as ADHD, anxiety, obsessive compulsive disorder, depression, and oppositional defiant and conduct disorders.
Furthermore, mental health issues may arise in children with I/DD due to Adverse Childhood Experiences (ACEs), which are incidences of trauma. Consider that children with disabilities are much more likely to suffer from abuse and neglect than children without disabilities, and such experiences can lead to post-traumatic stress disorder, panic attacks, depression, and various personality disorders.
Children who have both I/DD and a mental health diagnosis are considered to have “complex needs.” Fortunately, there is help available for them. Teachers and school counselors can play an important role by referring children for assessments and educating families about the services available.
A Lawsuit and a Settlement
Last year, Disability Rights North Carolina filed a lawsuit alleging that the State of North Carolina was not meeting its obligations to children with complex needs who receive Medicaid services.
North Carolina’s behavioral health system—which serves those with intellectual and developmental disabilities—operates in a silo entirely separate from the mental health system. Families who need help from both systems often get stuck in the middle. Providers of behavioral health services tell families they can’t help these children because their mental health disabilities make them difficult to work with. Alternatively, providers of mental health services tell the parents that they don’t know how to work with children with I/DD.
The basis for Disability Rights NC’s lawsuit was a provision of the federal Medicaid Act called Early and Periodic Screening, Diagnostic, and Treatment (EPSDT). This provision says children who have Medicaid are entitled to “necessary health care, diagnostic services, treatment, and other measures… to correct or ameliorate defects and physical and mental illnesses and conditions…” In other words, EPSDT requires the state Medicaid program to cover any treatment or service that will make or keep a child physically or mentally healthy.
Disability Rights NC settled its lawsuit with the State. As part of that settlement, almost anyone who works with children with complex needs—including teachers and other school staff—can refer them for assessments so they can get the help they need.
Available Services
In the settlement agreement, children with complex needs are defined as “Medicaid eligible children ages 5 to under age 21 with a developmental disability (including Intellectual Disability and/or Autism Spectrum Disorder) and a mental health disorder, who are at risk of not being able to enter or remain in a community setting.”
A teacher or other member of the school staff can call the local Managed Care Organization (MCO) to talk about whether a child may have complex needs. The MCO staff will assess the child’s developmental and behavioral status and risk factors.
If the child meets the “complex needs” criteria, she will get a comprehensive assessment to ensure she has the right diagnoses. A professional with experience diagnosing and treating individuals with complex needs will conduct the assessment and will work with the MCO to make sure the child gets the therapies and services she needs. Under EPSDT, that can include speech therapy, physical and occupational therapy, mental health care, therapies for autism such as applied behavior analysis, and many other treatments and services.
Thanks to the settlement agreement, there also is a new resource available for children who are having a mental health crisis — NC START (Systemic, Therapeutic Assessment, Respite and Treatment), a comprehensive program that provides community-based crisis prevention and intervention services. In addition to helping a child get stabilized, the program provides training and support to parents, teachers, providers, and agencies—anyone who is involved in the child’s life. The goal is to build communities that can support children with complex needs.
Learn more and educate others with these fact sheets from Disability Rights NC:
- EPSDT—Early and Periodic Screening, Diagnostic, and Treatment
- Services for Children with Complex Behavioral Health Needs
There are also videos available on these topics on Disability Right NC’s YouTube channel.