I can barely remember a time in which the work I did was not in the field of disabilities. As a lifeguard at age 16, my first save was a young man who had a seizure while swimming. From that moment, I was drawn to the work I still find myself doing more than 30 years later.
I, and others in my generation, fit naturally into a profession that by any standard would be known as a pioneering field. Many of us would have joined the Peace Corps (and lo, some of us did) but instead found the challenges of creating a better life for people with disabilities to be a logical extension of the civil rights movement of the 60s. Well-intentioned, though somewhat misguided along the way, we muddled our way, creating model after model of “best practices.” What most of us have found, despite our best efforts, is that there is no “one size fits all.”
Years ago we thought 8-bed group homes were the best thing since sliced bread. Then we thought smaller was better. Then we thought everyone should live in their own apartment. In reality, what people really need are choices—the proverbial array of options we have talked about for years. There are no panaceas, no perfect worlds, no nirvana. There is just life as we know it, support it, and nurture it. People with disabilities just want to live it.
Although I have always considered myself to be an advocate for disability rights, I found myself in the role of provider almost from the beginning. It never occurred to me that being a provider of supports and being an advocate were not one and the same. Most of the people with whom I worked held similar views. To create the supports was to advocate for people who needed them.
It was not until I first came up against a school system whose special education coordinator saw his job as protecting the school board, not advocating for students in special ed, that I realized that each of us defines our roles differently. Yet, over the years, most of my provider colleagues and I worked with an underlying assumption that we are advocates first and foremost.
So, imagine my surprise when, as a provider, I was told that I was not welcome at the self-determination table a few years ago. Not only was I not welcome, but I found myself in the odd role of being on the outside, relegated to observing. Had I not been on this road? Had I not advocated for the very change we were about to embrace?
As I listened to varying points of view, I found a cadre of people with developmental disabilities and parents whose vision rang true. Despite good intentions, agencies were still building boxes in which people were supposed to fit. Self-determination was a chance to break away from the pattern of creating systems.
Very few providers could envision how this would work; but conceptually it was sound. In the role I played with Maryland's Association of Community Services, I found myself advocating for this change among my peers. I found myself excited by the thought that finally we would have the support of government to step away from the prescriptive “parental” structure of providing supports. There was new energy in wanting to be a part of this transformation.
What we found is that people want all kinds of services. Some want traditional, some want cutting edge, some want facility-based, and others want things we have yet to create. In Maryland today, people with developmental disabilities, at least conceptually, have the autonomy to choose whatever provider of supports they wish. Conceptually, they are allocated an amount of funding in the form of an individual budget. When this was put into regulation, many people took advantage of the opportunity to change their lifestyles. Yet fewer people with disabilities than anyone originally thought chose to leave the agency that was supporting them.
Rather, many agencies gladly embraced the opportunity to support people in new, creative ways. The bottom line is, no agency went out of business just because people with disabilities had the autonomy to change providers. Most people worked with the providers and support staff who knew them to create a new vision for their lives; and even though agencies are no longer guaranteed a fixed budget, they are given more latitude to create lasting outcomes for people with developmental disabilities.
Like many states, Maryland embarked on a path to self-determination with the best of intentions and, like many states, found the devil in the details. Yet, the devil rests in figuring out how to get the funds to the intended recipients, not whether self-determination makes sense. Ideally, providers of supports will modify what they offer to accommodate customer satisfaction, and the state will monitor the quality of those supports to assure safety, health, and welfare accountability.
Yet all of this is jeopardized if funds are inadequate. Self-determination is not about things costing less (although sometimes they do). No state should do anything that would jeopardize the stability of the agencies supporting vulnerable people. The corners agencies would be forced to cut would have devastating ramifications for people with disabilities.
The problem is there just is not enough money in any system to fully support every person in addition to guaranteeing increased funding as needs arise throughout a person's lifetime. Good providers will balance what they must to manage risk and use any perchance surplus to augment additional services. Less than good providers will not necessarily figure out how to do this, and they will always be one step away from crisis, whereas some will just seize every opportunity to get whatever they can every time they can.
What we tend to forget is that there has never been a time when there was adequate funding in the disabilities field. There has never been a time when it was easy, nor has there ever been a time without challenges. It comes with the territory. Vigilance will always be necessary.
The only way people with disabilities will have improved lives is if our public policy truly reflects a positive value on people with disabilities. If they are entitled to services, they should be able to choose what makes sense for their own lives. The best measure of quality is determined by empowering someone who receives supports to take their funding and leave if they are unhappy.
Consumer satisfaction with community supports rose considerably in the first 5 years of self-determination in Maryland. (Bohnam, Basehart, & Marchand, 1999, 2000, 2001). Yet, not that many people changed providers or even the way in which they were supported. What changed was their empowerment to leave if they wanted to leave. Agencies were able to support people in ways that accommodated what they sought rather than what we thought they should have. Self-determination gave everyone, including providers, permission to step out of the box and return to being the advocates they were in the beginning.
Nothing would have worked in Maryland without collaboration. No one wants to feel left out, but more importantly, if public policy is to successfully change, everyone must be at the table. That does not mean everyone gets what they want or even that there has to be consensus; but it does leave open the notion that no one entity has all the answers. The trick is balancing everything, and it is not easy. Yet I have to wonder what “system” we would be creating in place of self-determination.
After these 30 years, I reflect on the many conversations I have had with people who have developmental disabilities. I have never met anyone who used to live in an institution who wants to go back, nor have I met anyone who used to live in a group home who now lives in their own apartment who wants to go back. People seek empowerment, autonomy, and the dignity that comes with a measure of control over one's life.
Each of us finds ourselves on this path for whatever reason, and none of us is more important than the people we support. That which we seek will only be accomplished through the efforts of enlightened minds; and it will take all that and more to achieve a satisfactory end. It is this journey, rather than the destination, that is important. It calls to us through a deeply rooted sense of what is right. Yet, its resolution can occur only through collaboration among those who would advocate for the full recognition of individual dignity, be they people with disabilities, their families, government, or providers of support.
There is only one voice to which we should be listening, and it belongs to the people we support. Through them we are given the measures of quality that are meaningful. Through them we are given the direction we should travel; and through them we should be held accountable.
Author:Diane McComb, MSEd, Executive Director, MD Association of Community Services (MACS), 877 Baltimore Annapolis Blvd, Suite 111, Severna Park, MD 21146. email@example.com.