An Idea for a Model Program: ID/DD Youth and Mental Health Providers

Several years ago I was with a group of social recreation participants on a movie outing. Most of the group was killing some time before the movie started by looking in nearby shops. I waited outside on a bench supervising at a respectable distance. One participant, Mylan waited with me watching the others. Seemingly out of no where he said, “I want a girlfriend who is normal”. I was surprised and ask him what he meant. “Normal, not with Downs Syndrome; Down Syndrome is ugly”. I turned to Mylan and said, “But Mylan, you have Downs Syndrome.”  Mylan said, “I know and I hate it. People see the Down Syndrome and they treat me different. They treat me like I’m stupid. Every morning I stand in front of the bathroom mirror and try to wash the Downs Syndrome off of my face.” It still breaks my heart to tell this story.

I tried to find some resources where Mylan could discuss his feelings with a professional. The negative self-image and shame Mylan expressed about his disability wasn’t unique to him; I’d heard a variation on this from many disabled folks I’d worked with. I’ve lived with it myself. I asked everyone I could think of about available resources and of course I was told that it would be a nice idea, but nothing existed.

A year and a half ago I contacted several local psychology programs and offered placement for therapy and counseling trainees in our adult program where they could experience working with ID/DD young adults. I was contacted by the amazing Janie Pinterits from Alliant International University’s California School of Professional Psychology [CSPP]. Janie is the Clinical Counseling Program Director. Dr. Pinterits has a keen interest is systems of privilege and social justice. She understood the value of the placement we offered right away.

The first year we hosted two CSPP trainees, Richelle and Ayanna. The original idea was to have the trainees come in twice a week for group talk with ACAT participant with these guidelines

• All group discussions are led by the participants
• All discussions are private and are not to be discussed with either myself or ACAT staff. The exception would be adult protection/mandated reporter issues
• The discussions have to take place in community settings [this is important because are need to disrupt systems in order to  discover change. We want the trainees to be in spaces where the ACAT participants feel most comfortable, not the trainees]

The foremost challenge for the CSPP trainees was communication. There is a long held belief in the psychology community that people with intellectual and developmental disabilities don’t have the capacity to benefit from traditional talk therapy. The problem is language; ID/DD folks have many unique forms of language. The burden is always placed on ID/DD folks to communicate in a manner or a language that is convenient for others [therapists, teachers, families]. The ACAT program insists that it is our job to learn the language of each individual and meet them in the place where they communicate from. This is simple respect.

Seeing this ethic in action was one the best moments in our partnership with CSPP. Ayanna made many unsuccessful attempts to connect with one of our participants who is a bundle nervous energy and speed. Realizing this, Ayanna started communicating with him while they power walked around and around the block. it worked and it was brilliant. A perfect example how to respectfully interact with our community.

The the first year of the project was amazing. The CSPP trainees offered a space were the ACAT participants could discuss the kind of personal issues that wouldn’t necessarily be discussed during program and whatever hesitation the participants might have had at first quickly melted away. The ACAT participants started asking for one on one time, which we found space the schedule to provide. The first year was more successful than I could have imagined.

Richelle and Ayanna continue to stay in touch with ACAT. They both have become advocates within their own disciplines, speaking out on the need to change how the psychology world approaches the ID/DD world. We are currently working on a grant proposal that will allow us to increase opportunities for students from CSPP to work in the ID/DD community.

We talk all the time about changing the narrative around disability. In order to move the narrative forward we need to enlist other communities, providers, and disciplines which have intersecting interests, even when those intersecting interest are not immediately recognizable.

We are entering our second year with CSPP. This year we are expanding placement to three trainees. The collaboration we have with CSPP is easy to duplicate and I would love to see other originations try it and share their experiences.