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Special Edition: Title V Technical Assistance MeetingExpand Special Edition: Title V Technical Assistance Meeting
Title V Technical Assistance Meeting

 From the President

MCH Can Better Engage Teens and Young Adults with Autism or Developmental Disabilities

By Susan Chacon
President of the Board
Association of Maternal & Child Health Programs

Our nation is experiencing an alarming decrease in resources for families of young people with autism and developmental disabilities who are struggling with mental health needs.

According to a Kaiser Family Health News Investigative Report, teenagers and young adults on the severe end of the autism or developmental disabilities (ASD/DD) spectrum are spending weeks or even months in emergency rooms or acute care hospitals – sometimes sedated or restrained – after experiencing a mental health crisis at home. Families are finding themselves in the untenable position of having to call 911 after their young adult with ASD/DD experience an acute psychiatric event such as attempted suicide, wandering, or aggressive behavior and are unable to contain the behaviors at home. Families find themselves in the emergency room waiting to transfer to facilities that specialize in treating ASD/DD youth in these times of crisis. Often there is no such facility or specialized care, and after the crises stabilize in the emergency room, families return home with a continued lack of support and resources. 

I moonlight at our local community hospital as a social worker, and inevitably when I work a shift on a weekend there is at least one 12-to-17-year-old in the emergency room waiting for a transfer to a facility due to a psychiatric event. The policy of the hospital is to admit the adolescent to the pediatric unit after 48 hours in the emergency room, but the unit is not staffed to address behavioral health needs and is mainly used to "cool down" and stabilize the acute crises.

Behavioral health was also the number one issue identified by families during my state's (New Mexico's) Title V Needs Assessment several years ago, and unfortunately, we have not made much progress on addressing this need since then  due to a lack of behavioral health infrastructure. The good news is that there are some emerging evidenced-based practices. This includes "wrap around services" where a team – which might include a physician, psychologist, and care coordinator – work with the young adult and his or her family to make sure the person's needs are met in all areas of life, from the home to school or work. Treatment may also include antipsychotic medications for aggression and behavioral therapy for aggressive and self-injurious behaviors.

We must advocate for more training and professional support for first responders, hospital emergency room staff, and other mental health professionals who serve youth with autism and other developmental disabilities who are in crises. Families need more autism-specific support services, especially on-the-spot emergency psychiatric care and access to wraparound community support. National Outcome Measures 16.3 (Adolescent Suicide) and 18 (Mental Health Treatment) can be utilized to measure progress. As Title V professions we must also leverage our work around National Performance Measures 10 (Adolescent Well Visit) and 12 (Youth Transition) to include assessment of behavioral health needs and access to appropriate care as an essential component of success.

These youth and their families work through enormous struggles at home; our health care systems must do more to ease those struggles, not compound them.