A Difficult Conversation – Mental health in children and adults with disabilities

When Michelle*, a San Diego mother of two, began noticing unusual behaviors in her 7-year-old son, a wave of concern came over her. “We already had a diagnosis of Autism, but it felt like a different kind of Autism. Then one day, I was watching a program about a young girl struggling with Schizophrenia. It dawned on me—that’s my son.”

It’s difficult to accept when a loved one has both an intellectual/ developmental disability (IDD) and a mental health condition. The experience can feel overwhelming and isolating, but it’s a necessary conversation. Members of our community who have walked this path, share the following action points, which have been helpful in navigating dual diagnosis.

Document and report changes. Changes in appetite, sleep, mood, activity level and behavior that have persisted for more than two weeks should be documented and reported to medical providers. Diagnosing a mental health disorder in an individual with an IDD is especially complex due to difficulties in learning, age, social and emotional skills, and nontraditional communication. Look for fluctuating behaviors ranging from disruptive and inappropriate actions to self-injury or aggression towards others. Write everything down.

Express concerns. If you suspect a person you care for has a mental health condition, Kate Kinnamont, associate executive director at San Diego Regional Center (SDRC), suggests speaking with your primary healthcare provider who can make a referral for a mental health evaluation and diagnosis. Both IDD and mental health should be considered when getting an assessment.

Seek professionals trained in dual diagnosis. A timely and accurate diagnosis, intervention, ongoing treatment and support provided by adequately trained professionals has been shown to increase quality of life for individuals and their families. 35%

Until recently, Michelle struggled to obtain a dual diagnosis to access adequate services and treatment from specifically trained professionals. Now, with growing attention on IDD and mental health (including dementia), the Mental Health Services Act (MHSA) provides special funding for prevention, early intervention, treatment and family support.

“There are agencies in California offering dual diagnosis training for their staff,” says Lucille Esralew, psychologist and member of the National Association for the Dually Diagnosed (NADD). “Look for professionals who have experience in dual diagnosis.”

Be aware of diagnostic overshadowing. The intersection of IDD and mental health is complex; many professionals in education and healthcare grapple with how to identify and best support them. “It’s important to be aware of diagnostic overshadowing,” says Luz Pinto of NAMI San Diego and Imperial Counties.

Overshadowing happens when a pre-existing condition or disability obscures the symptoms of another potentially serious underlying issue. This can lead to missed diagnoses and delayed or unreceived treatment. People with dual diagnosis are more likely to exhibit difficult-to-manage (sometimes dangerous) behaviors due to lack of coping and communication skills and resource limitations.

Get help from service providers. “One of the agencies we vendor with is START (Systemic, Therapeutic, Assessment, Resources and Treatment),” says Kinnamont. “The program

supports families through a clinical assessment and intervention, which includes linking families with other community providers.”

NAMI’s Transition Age Youth Mental Health Project (TAYMHP), an SDRC supported program in Imperial County, supports clients ages 14 to 22 who have a dual diagnosis. Programs may include coaching for parents and other persons supporting the individual, with strategies to mitigate crisis and enhance their ability to remain in their own home or community.

Request an IEP evaluation. Families whose school-age children utilize an IEP may request an additional evaluation and support from their school for mental health concerns. Legal protections exist to ensure that children receive assessments and services at school, which may include support for emotional and behavioral needs. IEP resources may be available through SDRC service providers such as TAYMHP and the Exceptional Family Resource Center (EFRC).

Be prepared. Crisis response teams encompass all needs and ages. Eileen Lux, a clinical social worker at Rady Children’s Behavioral Health Urgent Care, says they see patients as young as 5 years old.

If there is imminent danger to self or others, call 9-8-8. The Mobile Crisis Response Team (MCRT) has a crisis line to help access services (including hospitalization): 888-724-7240. Reach out to the SDRC following any crisis for continuation of care and support.

Local mom Rosie Haggerty quickly discovered that she needed a way to communicate her son’s specific needs with caregivers, emergency responders and other adults he comes into contact with throughout the day. Unable to find the documents she wanted, Rosie created a care packet of critical information, including a safety plan, her son’s doctors, medications, diagnoses, emergency contacts and more. To fill out a safety plan for your child, find the printable form in the online version of this article at www.sandiegofamily.com/resources/ resources-for-families-with-special-needs.

Create a community. The journey of a dual diagnosis can be overwhelming. There will be times when you just need to step back, take a breather and accept help. A community of family, doctors, schools, agencies and caregivers in similar situations can provide support and information. The collective experiences of those who understand often lessen pressure.

“A support group—even one other family in a similar situation—can provide the support, positive affirmations and knowledge [needed] to move forward … and realize you are not alone,” says Michelle. v

Linda St. Angelo Burritt is an educator, resource specialist and local mother of two, one of whom has multiple disabilities. *Michelle’s last name has been omitted for privacy reasons.

Obtain. Document. Explore.

If you’re feeling overwhelmed and don’t know where to start, here are three important steps that help simplify the process of getting support.

Obtain referrals. Contact primary care providers, SDRC and school staff to obtain referrals for a diagnosis and treatment of a coexisting mental health disorder.

Document and share. No one knows your child better than you do. What appear to be minor changes in behavior or activity may be invaluable to healthcare providers. Document and report everything.

Explore. Tap into family supports at NAMI and NADD; check the Behavioral & Mental Health section of this publication for helpful resources.