A Need for Housing and Cooperative Supportive Services?

By Lance H Hegland

Do you experience challenges developing an environment that provides the level of supportive services you need and grants enough privacy and freedom of expression? I often wonder if anyone else shares my frustrations.

I am an active thirty-one year old male experiencing the effects of intermediate spinal muscular atrophy. During the day when I am in my electric wheelchair, I am fairly independent. Sure, I still depend upon others for meal preparation, assistance using the bathroom, and other activities of daily living. However, when I am in bed, I am almost totally dependent upon others for assistance.  Some nights, I’m able to discover that “magic” position and sleep well throughout the night. Other nights, I get a cramp in my calf muscle, or my leg falls asleep, or my ribs begin to ache, or my lungs become congested,  causing  significant discomfort which causes me to lose sleep Then, what if my morning aide has a family emergency, car trouble, or difficulty traveling that delays or prevents him/her from getting to my home to assist me? How long can I comfortably, and more importantly safely, lie in bed? For me, it’s not only physical comfort and safety, but also emotional comfort and safety: the absence of anxiety and panic – unsure of when assistance will arrive. It is a tremendous quality of life issue.

Due to the varying degrees of assistance I require throughout a twenty-four hour period, I have faced significant difficulty maintaining an adequate level of support services while residing in a stable environment that promotes sufficient privacy and freedom of expression. Prior to moving back to the Twin Cities last spring, I was residing in a nursing home in my rural hometown community because there was not enough home care coverage for the level of support I required. I had very little privacy and limited freedom of expression (i.e. especially being a young adult – e.g. “Hey, wanna go back to my place, watch the game, and a have a few beers?” would usually receive a response similar to “Um, the nursing home? Nah.”). Though my basic health and safety needs were satisfied., my quality of life was not.  In my quest for a better quality of life, some privacy, freedom of expression, independence, and opportunities for growth, I returned to the Twin Cities. However, qualified and reliable home health care help, especially live-in staff, are difficult to find and retain. My current situation is still a far cry from the long-term stability I desire.

As a result of these experiences I’ve been exploring and developing a “cooperative supported independence” model for the past several years. This model will be established by a related non-profit organization to be named Supported Independence Partnerships. I envision a system in which each individual will have her/his own private apartment, condominium, or town-home unit and share support staff. At first glance, the idea may appear identical to an existing model in the Twin Cities. An important difference is consumer-direction based on the Robert Wood Johnson Foundation National Self-Determination Initiative Monadnock model. As such, the “cooperative supported independence” model will offer consumers the freedom to live their lives in the manner they choose, the authority to control their environment, the support they need to achieve the freedom and authority chosen, and the responsibility for the outcomes. For example, Supported Independence Partnerships will provide a forum for individuals desiring a similar environment to meet, plan, and create that environment. That group of individuals, the cooperative, will have the authority and responsibility for managing their environment (e.g. recruiting, hiring, training, scheduling, evaluating, terminating their support staff). The group as a whole would participate, so no one individual will shoulder the entire responsibility alone. Plus, Supported Independence Partnerships will help, if asked, to develop, implement, manage, and operate cooperatives. So, not even the cooperative groups will be alone!

If you or someone you know experiences similar challenges and desires, I would appreciate hearing from you. If you would like more information regarding my ideas for such a system, please feel free to contact me. My telephone number is 952-401-9808 and my e-mail address is lhegland@mn.rr.com. I look forward to hearing from you. Thank you!