Leaving The Institution for A Life In The Community

by Jeff Huffman

As I walked the empty halls, I peered into the empty rooms, celebrating the new lives of the residents we moved, but silently grieving for those that lived and passed away in these walls over the years.

As I started our consulting company little did I think that one of my first projects would be closing a privately run ICF/ID or nursing home for individuals with Intellectual and Developmental Disabilities.  Nor could I imagine it would be in the community where Jan and I grew up. I was brought in as a consultant to help the state with this project due to my background in long-term care, disability services, advocacy and father of a son with Down syndrome.

What we hoped would be a long- term plan to transition the individuals into the community but quickly became a 30-day voluntary closure of the facility.  The facility had been open for over 30 years and a few of the residents had been there since day one.  Some of them had seen multiple owners of the facility and many different staff members.  At my first meeting on site I specifically waited to tour the building and meet some of the residents until the end of my meeting.  I am glad I did.   I felt a rollercoaster of emotions as I met people and toured the building.  I had listened to the ownership talk about the effort and money they had spent on the upkeep of the building and programming.  I just did not see or feel we were on the same page.  While I felt empathy for everyone there, seeing individuals with Down syndrome in this setting was hard to process internally without showing it on my face for my tour guide to see.

I left that day knowing we had a huge project on our hands but that it would be best for everyone.

The process started right away.  We met with families, guardians, providers, case managers and anyone somehow involved.

As soon as things started coming together and providers were being picked, residents were starting to get excited and asking about their new homes and new friends.  It was exciting to see how many people no matter what their level of intellectual ability, understood they were moving and were excited about the future.

I was excited for the residents, a bit frustrated with ownership and had a feeling of despair for the direct care staff.  In all honesty, they worked hard, cared for the residents without much leadership and in many cases were emotionally attached to residents and were facing unemployment.  But they put on their game faces and helped in every way they could until the last resident had moved.  I passed out a few business cards and hope to hear from and help find a new position for some of the ones I was really impressed with them.

We worked through the process and one by one people started moving out of the building and into the community.  Some moved to small group home settings, some to supported living waiver services and a few of the elderly moved to other long-term care facilities.

On the last day of the transition the last few residents moved out late in the afternoon.  A few memories I will always cherish were the smiles and waves goodbye saying, “ Bye, I am moving to my new house” “Bye gonna miss you” coupled with “Well not sure living with my sister is a great idea, she thinks she is my boss”, all the comments made me smile.  There were easy and happy transitions and a few emotional, tough ones.  But over 60 individuals left the facility for new homes and new lives.  My hope and dream is that every one of them excels in their new setting and can take on life at full speed.

This process has changed me a bit.  I have many things going on in my world but it made me think of the poem “The Dash.” I hope I am here on this earth for many more years but know that my time to dent the universe is moving way too fast.  Nash is growing up quickly, and I want to make sure things are better and everything is in place for him after we are gone.

Are we doing all we can to end institutional settings like this? Are we leading the charge toward the closure of sheltered workshops?  Are we working as hard as we can on inclusion and meaningful special education that results in a diploma?  Are we as families exploring and expanding post secondary education opportunities?  Are we networking and talking and asking everyone we know to open the doors to meaningful full time employment that leads to being independent and a valuable member of the community?  Are we working toward recreating living opportunities in our communities?  I know there are other areas but these happen to be the ones that are important to me.

Yes, this process drained me emotionally and physically but it also lit my fire to get things done!

If you feel the same way I invite you to join Jan, Nash and me as active volunteers with The Arc of Indiana!

Jeff Huffman serves as Chairman of The Arc of Indiana Education Committee and is Head Coach of Huffman Consulting