Parents of children with intellectual/developmental disabilities may not initially realize that their child may also be struggling with mental health issues. It may be difficult to determine the cause of challenging behaviors.
IT'S MORE COMMON THAN YOU THINK: HOW TO GET HELP WHEN YOUR CHILD HAS A DEVELOPMENTAL DISABILITY AND MENTAL HEALTH ISSUES
BY LAUREN AGORATUS, M.A.
PREVALENCE
Research shows that 35-50% of children with neuro/developmental disabilities may also be susceptible to mental illness.1 The difficulty is that many systems are in silos, meaning that systems that deal with developmental disability may not address mental illness and vice versa. According to the NJ Family Crisis Handbook (see Resources), "The problem is the DD community doesn't have the mental health expertise; but the mental health community doesn't know how to deal with challenging behaviors or modifying their approach for someone with a developmental disability. The expertise in both the areas of developmental disabilities and mental health is essential for cost effectiveness and, more importantly, better patient outcomes."
There is also the misperception in some professionals that individuals with developmental disabilities will not benefit from mental health treatment. Families have been told that "impairments in cognitive abilities…make psychotherapy ineffective." Some parents have been told that "children with developmental disabilities are not capable of benefiting from mental health services." This is inaccurate; many mental health therapies can be modified for those with developmental disabilities. It makes sense that individuals with intellectual/developmental disabilities (I/DD) could also have difficulties related to mental health since I/DD is described as including deficits in adaptive behaviors and social/emotional coping skills.
HOW TO TELL THE DIFFERENCE
Challenging behaviors may be difficult to distinguish, particularly in the moment. Families may also have emotional reactions which may muddy their thinking. One myth is that developmental disabilities are the only cause of maladaptive behavior. People with I/DD can have mental illness, just as in the general population.
Parents have called the Children's System of Care in their state for help and are often asked if their child has a developmental disability. They may then be referred to a behaviorist when in fact they need mental health help. A child with a developmental disability who is threatening to kill themselves or others is in crisis, and behavior modification is ineffective.
Families can try to get a functional behavioral assessment from the school district (determines if the behavior is a function of the disability). Parents can also get a mental health assessment from a pediatric provider.
HELPING PROFESSIONALS TO HELP YOUR CHILD
Parents need to make sure that they're being clear with providers about what's happening with their child. Is it a typical "meltdown" due to autism or other developmental disability? Is it a mental health crisis outside of what is normal for the child?
Families must be aware that school districts may segregate students in either out-of-district placements or even home instruction. Home instruction was initially used for medical issues and is now being misused for challenging behaviors. School districts can include counseling, positive behavioral supports and interventions (PBIS), and other related services in school. IEPs (Individualized Education Programs) identify supports and services for children with disabilities, including I/DD and mental health disabilities, in schools. Families can contact their Parent Training and Information Center (see Resources) for help in this situation. Community-based services are essential for both children and adults in light of the Olmstead court decision.2 Those with a dual diagnosis of developmental disability/mental illness (DD/MI) are more likely to be segregated due to the institutional bias that still exists in Medicaid.
Is is it a typical "meltdown" due to autism or other developmental disability? OR Is it a mental health crisis outside of what is normal for the child?
One solution is to utilize cross-training across the DD and mental health systems. This must be ongoing due to high turnover of professionals. In addition, stakeholder input must include families of children with DD/MI as well as family-led organizations. Services must be consistent, regardless of geography.
While family caregiver engagement is key, this must be done in compliance with HIPAA (Health Insurance Portability and Accountability Act) to protect privacy. This is particularly essential in states with minor consent to treatment. There should also be procedural safeguards in place when children and parents disagree on treatment. It is difficult for anyone, even an adult, to recognize when they may need help if they are in crisis.
It is essential that underserved families be reached and served. Any family engagement must be representative of the population served. Services must be culturally and linguistically competent and result in the reduction of stigma.
A WORD ABOUT RESTRAINTS AND SECLUSION
Individuals with developmental disabilities, mental illness, or both, are a vulnerable population that is far too often subject to the inappropriate use of restraints, aversive interventions, and seclusion, all of which can result in increased morbidity and mortality. Restraints and seclusion are ineffective as behavioral intervention and are experienced by those subjected to these interventions as trauma, impeding recovery. The American Academy of Pediatrics (AAP), Maternal & Child Health Bureau (MCHB), and the Substance Abuse and Mental Health Services Administration (SAMHSA) among others, have developed guidance to eliminate the use of these techniques. The AAP actually considers these techniques as maltreatment of children with disabilities, akin to abuse (see pediatrics.aappublications.org/content/127/5/e1367). The key is the use of PBIS, emergency planning, and preventive strategies.
BARRIERS AND PROGRESS
One of the biggest issues is that there are not enough providers who are competent to appropriately serve individuals with DD/MI. Sometimes this is linked to low reimbursement rates so some providers are not willing to take Medicaid. Some states have addressed network inadequacy by integrating mental health into primary care. This is done using a child psychiatrist in a consultative model with a primary care physician.
Many states now have Children's Systems of Care (CSOC; see Resources). These now include services for children with developmental disabilities, mental illness, or both. States may also have families serving on a CSOC stakeholder group providing input on systemic issues.
FINAL THOUGHTS
If possible, de-escalate to avoid involvement with juvenile justice or police. However, if the person is a danger to self or others, call 911.
In summary, progress is being made in that some systemic changes are beginning to address both developmental disability and mental illness. Functional communication will help children from becoming frustrated and acting out. Prevention (being proactive), rather than being reactive, is most likely to help one avoid crisis. Using a comprehensive approach, families of children with developmental as well as mental health challenges will have their concerns better addressed.•
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the parent of a young adult with multiple disabilities. She serves as the State Coordinator for Family Voices-NJ and as the central/southern coordinator in her state's Family-to-Family Health Information Center. FVNJ, the NJ F2FHIC, and the FFCMH State Organization, are all housed at the SPAN Parent Advocacy Network (SPAN) at spanadvocacy.org
References
CRISIS AVOIDANCE : MENTAL HEALTH RESOURCES
TITLE V (in your state) mchb.hrsa.gov
PARENT TRAINING AND INFORMATION CENTERS (for school issues) parentcenterhub.org/find-your-center
(NJ) REVISED FAMILY CRISIS HANDBOOK: A MENTAL HEALTH, STABILIZATION, AND WELLNESS TOOLKIT performcarenj.org/pdf/families/revised-family-crisis-handbook.pdf
NATIONAL ALLIANCE ON MENTAL ILLNESS nami.org/Find-Support/Family-Members-and-Caregivers
NATIONAL FEDERATION OF FAMILIES FOR CHILDREN'S MENTAL HEALTH ffcmh.org/our-affiliates