This is a guest post from The Arc.
Many individuals with intellectual and developmental disabilities (I/DD) have spent their lives in institutions without the opportunity make decisions for themselves. Jackie Yarbrough’s twin brother, Johnny, was one of them. When Johnny Owens was born in 1962, there were complications during birth. Today, Johnny lives with a significant disability and is non-verbal. He spent the first few years of his life at home with his parents and sister before moving into a private institution in Alabama. Then when he was a teenager, he moved to Partlow, one of the largest state run institutions in the country (closed in 2011). When his parents moved to Montgomery, Alabama, his family chose to move Johnny to Tarwater Developmental Center so that they could be closer to him.
When the state of Alabama decided to close the majority of institutions and support community living, Johnny’s family was faced with a hard choice — move Johnny back to Partlow or move him into a group home run by The Arc of Jefferson /Blount County, which was five minutes from his sister. Jackie and her mother agonized over the decision — a community living situation was an unknown. For the majority of Johnny’s life, institutional living was the only option his family knew and the choice in front of them could profoundly change Johnny’s life.
As a partial guardian for her brother, Jackie weighed the options. “I was scared to death of moving him. It was an unknown and we didn’t understand it. When all you have seen is institutions you don’t know any better, you think that is all there is for your loved one,” Jackie said of the decision.
What Jackie and her family didn’t realize was that decision to move Johnny away from institutions and into the community would be the best decision of their lives.
“When he moved, I was so emotional and worried that I was making the wrong decision. I wrote myself a letter about my feelings. I decided in a year to open the letter to see how I felt. It was the best thing I did. Opening that letter and seeing my fears and concerns and then looking at how happy he was and how well he was doing was amazing. It was phenomenal to see how far we had come in a year. I encourage families faced with this decision to do the same,” reflected Jackie.
Just one year after leaving the institution and moving into a group home with 2 roommates and a direct support professional from The Arc of Jefferson/Blount County, Johnny’s life drastically improved. He was off his appetite stimulants and his behavioral problems were a thing of the past. His family almost immediately noticed the difference in his mental and physical health. Johnny now participates in a variety of programs with his local chapter of The Arc including educational classes, vacations, and social events with his peers. Jackie bursts with joy as she describes Johnny’s happiness as he fills his birdfeeders and watches wildlife in his backyard. He has a life just like everyone else, enjoying time with his friends and family, but also enjoying an evening relaxing in his recliner. All of these seemingly simple pleasures are things that weren’t an option for him when he was in an institution.
Jackie’s dilemma is one that many families and caregivers face. The fear of the unknown when it comes to caring for a loved one with I/DD can be overwhelming. Jackie now advocates for community living. When Partlow was closing in 2011, she visited families of individuals still living there to share Johnny’s story. She offered her advice and insight, “Change is not always bad. Change was my biggest fear. Johnny was always institutionalized and I knew what that meant for his safety. If I had known now how happy and successful he would be in the community, we would have done this 25 years ago. You look at your loved one and think — can they really live in a community home?”
Johnny has been living in his own home with his roommates and with the assistance of direct support professionals for over a decade. To this day, Jackie considers the choice to move him into the community one of the best of her life. It is scary to change from what we know, but change can be positive. Look at Johnny and Jackie — twins living in the same community, happy, and able to see each other as often as they want. A life that wouldn’t be possible if Jackie hadn’t embraced change.
The Arc supports the full inclusion of individuals with disabilities in typical communities. Join our cause and show your support for a future of inclusion for individuals with I/DD. Please sign the petition today to show your support for community living opportunities, and stand up against unnecessary institutionalization.
The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.
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