Those of us who have been involved with the service system that supports individuals with developmental disabilities and their families are familiar with the role of case manager. When you become involved in New Jersey’s current self-direction program – Real Life Choices – the individual who is basically your case manager is called a support coordinator. The support coordinator also helps an individual develop a life plan and decide how to spend their budget. They facilitate, coordinate, and support. It takes time to get to know the person you need to support and their families. And, if that person has a limited ability to communicate, well that task is even harder. Over the last three years we have been working with a wonderful support coordinator who has gotten to know Lauren’s needs, what her family’s concerns and hopes are for her, and who has walked us through the technical aspects of developing, maintaining, and successfully utilizing a budget. She has also been a sympathetic ear when I needed to vent and a supportive, professional advocate teaching us to navigate self-direction.
The organization who is responsible for providing support coordination is making some changes. I understand that they are probably motivated by the current state of the economy and organizational issues. They have been a responsive and effective provider to date, but sometimes you know you just get tired of being understanding. They say they want to make the coordinators “county based” so that they have a “better local knowledge of county resources and opportunities”. Isn’t it less difficult to find out what a county or town has to offer than it is to get to know someone like Lauren and to develop a relationship with her and her family? It may be an economic or organizational matter for an agency but for families it comes down to a matter of trust and respect. Trust developed over months and years is important and something of a rare commodity for those of us who have dealt with New Jersey’s ineffective case management system for many years. And, respect, well it’s a two-way street. We must feel that we can respect the abilities and knowledge of the people who need to support us and we need to feel respected for our roles and knowledge as family members who have devoted our lives to supporting our family member with a disability. Those of us who have developed a relationship of trust and respect with our support coordinator are now having that valued relationship taken away. We have no choice in the matter. I thought the whole premise behind self-direction was choice. On the support coordination agency’s website they list the principles of self-direction. They are:
Freedom... to make our own choices
Responsibility... for the choices we make
Authority ... over the resources that support us
Community... where we all belong
Citizenship... with all of its rights and responsibilities.
Are those principles in effect only when it’s convenient?