Kathy Bates

“Mental health problems don’t define who you are. They are something you experience. You walk in the rain, and you feel the rain but, importantly, you are not the rain.” — Matt Haig

Mental health is a community issue, and it feels more important than ever. Community supports and services can play a significant role in reducing the stigma that surrounds mental illness. However, traditional mental health counseling is not always helpful for everyone.

In 1988, Joan Beasley, PhD, and her colleagues developed the START (Systemic, Therapeutic, Assessment, Resources, and Treatment) program in Massachusetts to address gaps in training for mental health professionals in treating the mental health needs of individuals with IDD. The research-based model provides services and supports for individuals with an intellectual or developmental disability who also have a mental health (MH) diagnosis or behavioral health needs. 17 other states operate their own unique programs.

The first time I met her Melanie Hecker made me laugh. I knew she could help me understand what made the nationally recognized START model different. Her perspective as someone with lived experience was just what I was looking for. The CSS research and training associate happily accepted my invitation for an interview. Melanie recently graduated from the Rockefeller College of Public Affairs and Policies with a masters degree in public administration and a dual concentration in policy analytic methods and not-for-profit management. She is also an Autistic adult with co-occurring mental health challenges.

Melanie explained, “Traditional mental health and developmental services are very siloed. The two groups don’t communicate with each other all that much. They fail the people who have a dual intellectual or developmental disability who also have mental health challenges.”

“START is different because it takes an integrated approach. It’s a model and a series of services put into a combination that is specifically designed to address the needs of people who have both a developmental disability and a mental health challenge, both in terms of treating the people directly but also trainings and linkages with communities to ensure that they integrate the two practices more. There are also the aspects of a person’s identity that are accommodated. Their race, religion, and sexual orientation is all taken into consideration when it comes to treating the whole person.”

Melanie’s first research project for the Center for START Services was assisting in the development of an integrated best practice guide for medication prescribers who are treating patients with a dual diagnosis. As part of this, “I conducted focus groups with family members, caregivers, and self-advocates with lived experience. There were groups for prescribing and non-prescribing clinicians as well. Once we had our focus group information, we were able to write this guide that contains hard science medical information, as well as some softer material, like how to interact with patients and how to design a waiting room with sensory and cultural considerations in mind.”  

I could hear the enthusiasm in Melanie’s voice as she told me that the Integrated Mental Health Treatment Guidelines for Prescribers in Intellectual and Developmental Disabilities (IDD-MH Prescriber Guidelines) was their number one downloaded resource and currently it is being adapted for online training. It will then be evaluated for its effectiveness in educating medical students and fellows.

Melanie is currently working on two pandemic-related research projects.

“We are trying to figure out just how effective mental health programming is when delivered through telehealth for people with IDD.” She is also developing a survey that asks caregivers if they are having trouble accessing emergency psychiatric treatment for people with IDD and if so, what else did they do? 

“People might have been resorting to calling the police.”  

As a trainer for START, Melanie has an important message: “When it comes to people with intellectual developmental disabilities and mental health challenges, you need to look beyond behaviors that may be bothering you or others and look into what may be truly causing it. You may have to consult with people with disabilities to figure out the root cause.”

Melanie’s comments remind me of something I was taught a long time ago as a special ed teacher. Everyone communicates, and all behavior is communication.

Here’s one last thought from Melanie about the importance of people with disabilities being involved in all aspects of program development, research, and training that directly affects their lives.

“It is extremely vital for people like me who have these lived experiences and people like you and any kind of disability to be involved in research and training. We’re going to be the only ones who know what it is truly like to be us. There are some people who may be hesitant to involve people with developmental disabilities or other types of disabilities in research and training, and I say don't be hesitant because we're a lot more capable and a lot more insightful than you may think.”

From where I sit...

Nothing about us without us—these  words represent a core belief that if a person’s ability is recognized and nurtured, when given the right supports, they will thrive. Everyone has the right to participate in their own lives, to the fullest extent possible. Building a circle of support around someone and seeing their humanity can help make this happen. People with disabilities should take a leadership role in designing the supports and services that impact not only their lives, but the lives of others with disabilities.

We know that lived experience is invaluable. Melanie Hecker’s insight will continue to improve START’s programming and educate clinicians, legislators, family members, and advocates. That's how you change the world!