Frontline Initiative Legislative Advocacy

Imagine your life if you had a disability. Imagine every aspect of your life being controlled by rules and regulations. Rules that dictated where you live, who you live with, choices you can make, and even who can support you. This is the reality for millions of Americans with disabilities. Government has enormous impact on the lives of people with disabilities. Their services and supports are almost entirely underwritten by taxpayer dollars. Government — or rather, public policy — affects who can access supports, the types of supports they can receive, and how supports must be provided.

Public policy affecting people with disabilities has different dimensions, two of these are lawmaking and funding. Lawmaking, or legislation, is the framework for rules and administrative decisions that affect how services are provided to individuals with disabilities. Funding or budgeting is the dollar amount attached to the carrying out of the laws. It has long been observed that the budget — rather than laws or regulations — is the truer measure of how committed government actually is to a policy’s objective. For example, many states have enacted laws to create family support programs, but there are marked differences among the states in the extent to which they fund family support. Some states have adequately funded these supports while other states have not.

Policymaking within disability services takes place continuously in many different ways. Policy is made when a state legislature acts on the budget. It is also made when Congress enacts federal laws, or when executive branch agencies issue rules or make decisions concerning payment rates, or when local human services boards adopt new purchase-of-services policies.

Policies are the end products of processes that start with decisions about what will be considered, continue with securing input and information about potential changes, and ultimately result in decisions. Affecting policy starts with placing a topic on the “agenda.” How the topic is addressed hinges on many factors, including who is “at the table” and whether policymakers become convinced that a change will have positive results. Policymaking has a “work” dimension — identifying alternatives and the potential effects of choosing one alternative rather than another. Too often, policymaking processes seem intimidating. Policy issues are frequently complex and there is no doubt that many have “knowledge” dimensions. However, at the end of the day, policymaking fundamentally is the result of the give-and-take among people in search of solutions to problems.

What does all this have to do with DSPs? DSPs are directly affected by public policy. Their pay and benefits depend on budget decisions. Requirements for credentialing and training affect what positions they will qualify for. There is absolutely no doubt that the quality of service for people with disabilities depends on the skills and commitment of the workforce that supports them day by day. Policy changes which ensure that there are skilled and competent workers to support individuals with disabilities often do not make it to the agenda or are postponed. Keeping these issues on the front burner depends on the extent to which DSPs engage in the policymaking processes. DSPs are fundamentally concerned that, at the end of the day, the outcome of public policy is that people with disabilities are well supported in their communities. DSPs possess enormous expertise and insight concerning how supports actually affect the lives of people with disabilities, and therefore understand how to improve their quality. They can make enormously valuable contributions along many dimensions. But in order to make these contributions, DSPs must engage in the policymaking process.

It is vital that DSPs are at the policy making “table” to address the issues that affect people served and to speak out for issues that affect them personally. Being a part of the decision making process and taking part in the discussions can have great impact on what issues will be acted upon. It is important to offer concrete proposals and make positive contributions to resolving broader issues.

DSPs are sure to be welcomed to the policy making table. Disability policymaking has become more open and inclusive as self-advocates, families, and DSPs have come together with policymakers who are interested in obtaining input and information from everyone involved. Collaborative policymaking is more commonplace, but there is still a long way to go. Some states and localities are better at fostering collaboration and inviting participation than others. Learn about what is going on in your state and local area and look for opportunities to participate. Do not be bashful or intimidated! The simple fact is that being involved in the policymaking process is fundamental to addressing a host of very hot topics such as assuring and improving quality, expanding access to services, providing consumer-directed services, and enhancing direct support wages and opportunity for education and training. DSPs have valuable contributions to make along these lines. You will bring welcome expertise and insight to the table.

There is no doubt that becoming engaged in policymaking requires a commitment of time and energy. Many major policy changes have been the result of the sheer perseverance of families and advocates. There is no doubt that DSPs face many challenges in this regard. Taking time off work is difficult and DSPs, like everyone else, have many other responsibilities. Undoubtedly, in order to engage in the policymaking process, DSPs will need to network among themselves to share responsibilities and assignments. This is not easy, but it can be done. The enactment of family support legislation in many states can be traced back to family members building networks and coalitions among themselves in support of such legislation. DSPs can also build networks and coalitions that will foster changes in legislation.

In addition, finding out what is happening with public policy and networking with others are both enormously aided by the Internet. Information can be spread rapidly via e-mail groups at no cost. State agency and advocacy groups have Web sites that can be scanned regularly. Where there is a will, there is a way.

Public policy concerning people with disabilities is everyone’s business — including yours. Policies will be better as a result of your active engagement in policymaking processes. Please do not be bashful. Get involved and stay involved.