Program Profile

Impact Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities

Self-Directed Support Corporations: What a Difference They Can Make


Jackie Golden is the Executive Director of Inclusion Research Institute, Washington, DC.

Self-directed Support Corporations (SDSCs) are, simply, a small legal support provider for one person with a disability. But they are also much more than that. The SDSC puts control and direction of supports back in the hands of the person with a disability needing the supports. The SDSC follows an incorporation process and develops a not-for-profit agency. The SDSC is overseen by a board of directors consisting of trusted allies of the person with the disability. The board must get their direction from the person with the disability. The person with the disability may select to be the President of the board, a voting board member or not serve on the board at all – it is the person’s decision. The board of directors must find ways to listen to the person, even if the person doesn’t have a formal communication approach. It is for this reason that the board of directors must consist of people who believe in the person needing supports, and that the board have a vision that embraces and respects the person’s desires and support needs. A person with the disability then has a support network of people who believe in him or her. It is self-directed because the board, which receives its direction from the person, decides what supports are needed and how supports are used.  These supports are custom-designed around the person’s wants, dreams, and needs.

How Does a SDSC Work?

Each state in the United States has procedures and regulations for becoming long-term care providers. The SDSCs follow those same procedures and regulations. The only difference is that the SDSC only designs supports for one person, rather than hundreds. Like other providers the SDSC has to follow the state guidelines, regulations, inspections (if required), as well as federal guidelines. In this way, the SDSC is accountable for public dollars spent and also accountable to the person who is being served with those public dollars.

There have been questions around the SDSC concept. One question is “Does the state have to do something different within their regulations or waivers to allow the SDSC to form?” The answer is simply, no. If your state has long-term care providers, then they can also have SDSCs. They are the same as any other provider that follows the same set of regulations. Some states have “waived” some requirements for the SDSC, because these requirements didn’t make sense for a provider agency of one.  The SDSC must provide quality services, maintain a fiscally responsive system, and assure accountability at every level to the state and federal governments.

The SDSC approach is quickly gaining popularity across the United States as this approach offers many things to a person needing supports. The best thing is more control and freedom in their own life. People who care about them, not people who don’t even know them, assist in the arrangement of personal supports; we all know that we are better off when we have people who care about us in our lives. In addition, this approach provides accountability to the state and federal governments, creating a win-win situation for a person with a disability, their trusted allies (friends and family), and the government.

So, you may ask, “Is the SDSC model for everyone?” The answer to this question is also no. This concept should be viewed as another option. The problem with our systems has always been that we approach supports as a “one size fits all” model. Over the years we have discovered that this model doesn’t take into account the individuality of each person and also it is a costly mistake. So the SDSC may not be for everyone, but for many who have ventured down this path, the changes it has made in people’s lives are remarkable.

In 2001, the Administration on Developmental Disabilities awarded Inclusion Research Institute (IRI) a grant to promote the SDSC model throughout the United States (see IRI has been tracking the establishment of the SDSCs approach over the past two years. Currently there are approximately 55 SDSCs across the United States and the numbers are growing rapidly. States that have these small boards already established are Maryland, Colorado, Oregon, Missouri, Utah, Oklahoma, Virginia, Pennsylvania, Arizona, and Tennessee. One illustration of what an SDSC can do can be found in the example of the SDSC established for my own son Joshua.

Joshua’s House Incorporated!

Joshua’s House Incorporated (JHI) is much more than a name of a corporation. It is my son’s – Joshua Golden’s – lifeline. JHI is a SDSC that was designed to deliver the supports Joshua needs to live successfully and fully included into his community. Simply put, JHI is a provider agency, but doesn’t provide services to 500 people – it provides custom designed supports for only one person, Joshua. For Joshua and his family JHI delivers his supports using the principles and tools of self-determination. But more importantly for Joshua it delivers freedom!

Joshua Golden is a survivor of our (traditional) support networks. By this I mean that our system has provided some type of supports since Joshua was eight years old. These supports never matched Joshua’s needs and often hurt him physically and mentally. We explored the SDSC model and often wondered, “Why can’t we become the provider?” We knew that the government needed their accountability, but Joshua needed control over his supports and our systems were taking too long to catch up with Joshua’s needs. So the SDSC was the answer.

How does it work? We have formed a not-for-profit, JHI, around Joshua and become the legal entity, as his agency, to receive Joshua’s allotted Medicaid dollars. Only people who care about and share a vision for Joshua serve (on a volunteer basis) on his board of directors. The board, committed to Joshua, assures that he receives services that match his needs, desires, and lifestyle. He is in control, with the assistance of people who want him to be successful.

What does this mean for Joshua? It means that he no longer has to deal with a system that doesn’t value him as a person. He can select who comes into his life as his support team. He is the director and decision maker, balanced with others who care about him. By now you are thinking that Joshua is a very able young man. That is true. And if you met Joshua you would realize that he needs care 24 hours a day, seven days a week care and that he has significant cognitive disabilities. It is his support team, JHI, and his staff who recognize that Joshua is at his best when his life is filled with people who care and want him to succeed.

What does this mean for Joshua’s family? Joshua’s sister and his parents serve on his board, along with Joshua. The board also has five other board members, so Mom can be out-voted (as it should be), as it is Joshua’s life. The key is to have people with a vision and commitment who are willing to spend time with Joshua. It also means a support network for Joshua’s family. No longer is it only his parents looking to secure Joshua’s future. It is his legal board of directors that is working for him. Joshua’s sister now realizes that she will have people to help her with Joshua when his parents are no longer around; it is a support team for her as well.

We have been asked what it is like to have such an agency for Joshua. Our response is that while it is work, it is the most wonderful thing that has happened to Joshua and us. He truly can have a life that is his own and we can finally sleep at night, knowing that there are only people who care about him in his life. Joshua does not speak, or at least not in a verbal response. But one look at that terrific smile of his and seeing him relaxed and loving life says it is worth every minute of establishment of a SDSC. He is finally free.