True Story – Changing the Life of IDD Individuals

Individuals with Intellectual and Developmental Disabilities (IDD) are too often misunderstood, marginalized, or far worse. They often require more patience than we’re used to having, more time than we’re used to giving, and more resources than we’re used to sharing. When emotional, physical and financial bandwidth is stretched, many caregivers or family members react by shutting down their hearts, raising their defenses, and ultimately, dehumanizing the IDD individual. There may be a myriad of reasons for this – perhaps they’re experiencing hardship emotionally or financially – perhaps they have their own unprocessed trauma which doesn’t leave them the emotional currency to care for others with higher needs. Unfortunately, the outcome for the IDD individual is, too commonly, painful. Being able to help step into these spaces, providing a lifeline to IDD individuals in need, is one of the best parts about working for Cheyenne Village – a non-profit organization in which every member of the team – at every level – cares deeply about the individuals we serve.

Names and details of the following true story have been altered to protect identity, but here’s a snapshot what this kind of care looks like. John was diagnosed as disabled at a young age. Familial upheaval which he could not fully process or understand affected him profoundly. His needs as an IDD individual weren’t extraordinarily high, but they still taxed the members of his family as they dealt with a number of other challenging issues. John was relegated to the margins, and for years, tolerated, though only temporarily – being shuffled from one relative to another as each tired of the support he required. John also began suffering from a condition for which he was not at fault. This condition was contagious, but also very treatable. In fact, the condition was treated to the point where John was in full remission, and there was no longer any danger of transmission. However, due to stigmatization, ignorance and fear, the family blamed John for the condition, and quarantined him to his room. For many long months, John was unable to leave his room except to use the bathroom. He had no access to the community, and only a small window to see out of. Most of his belongings were also quarantined – not with John – leaving him alone in an empty room. Food was brought to him and left outside his door. Finally, the family sought to have John removed from the home – which could have left him potentially homeless – if not for organizations like Cheyenne Village.

His living conditions presented us with two options – either bring in Adult Protective Services due to the severity of the living conditions (which might result in complex and traumatic outcomes for John) or provide immediate housing before funding was approved – a gamble for a small non-profit organization! At a meeting, the team decision was instantly unanimous – we would provide him housing and front the money needed for a variety of immediate needs, hoping that the funding would eventually come through. The next day, when I picked John up to tour his new home with Cheyenne Village, his first question was, “If I move into this house, do you think I’d be able to go to church?” What a heartbreaking question from someone who had been isolated for so long! “Of course!” was my answer. Our team would support him in whatever life choices were important to him.

Within just two days of meeting John, our team was able to move him to a new location, where he has full freedom to come and go as he pleases. He came with only the clothes on his back – but the day he moved in, he was able to shop for all new clothes, as well as a variety of other items. He was most excited to be able to actually pick out clothing that related to his interests – with total freedom. He’s learning to cook, is able to fully engage with his community, and is making many new friends. John is a friendly person – polite, warm, and enthusiastic. Whenever I see him, he excitedly shares the latest updates on what he’s learning, what he’s been able to buy that week, and new people he’s met. He’s a magnet for friends and regularly welcomes visitors. His dreams have come alive again – and our team is working with him to realize those dreams. In short, John has a new lease on life – the value of which is inestimable.

Autism, Cerebral Palsy, Lennox Gestalt Syndrome, Down’s Syndrome and other Trisomy conditions, among many other developmental disabilities, present difficult challenges to families, caregivers and even the wider community. Yet, when we put humanity above cost, we can change lives, like we were able to change John’s. What an honor!