University Center for Excellence in Developmental Disabilities




Policy & Systems Change
Area of Emphasis

Within the Public Policy and Systems Change Area of Emphasis, the Waisman Center UCEDD works to promote the development and effective implementation of public policies, services and funding streams that support individuals with developmental disabilities to live to their fullest potential in the community. Taking from wording within the Developmental Disabilities Act, the UCEDD is to serve "as a research-based resource for Federal and State policymakers on information concerning and issues impacting individuals with developmental disabilities and entities that assist or serve those individuals."

Within this Area of Emphasis, the UCEDD provides training to increase understanding of the public policy process and how to participate in it, and serves on a wide range of local, state and national committees to inform and support the creation of public policies that are effective, efficient and responsive to the needs and preferences of individuals with disabilities and their families.

Challenges and Opportunities

Complexity of the public policy process

The public policy making process involves a continuum of activities that includes identification of issues, formulation of policy proposals to address with those issues, advocacy to support adoption of proposed policies, creation of rules and regulations to apply policies, and monitoring and evaluation to assess impact of policies and subsequent recommendations for change. Efforts to promote successful public policy must give attention to each of these activities. Also, it is essential that those who are impacted by the policies be involved in the processes that shape the design and implementation of those policies.

Inconsistent policies across systems

While the process to create public policy is defined and straightforward, that process does not always result in the creation of policies that are coordinated and consistent across levels of government and the private sector. Fragmented policies are more likely when policymakers have differing views on the nature of the problem and the directions they should take to address that problem from a public policy perspective. As a result programs across systems and agencies may work independent of one another making it difficult to blend services across systems. Fragmented policies can also result when there is a need to address an immediate problem, but there is not sufficient time for the level of thoughtful planning, negotiation and coordination among different agencies.

Disability Policy Framework

As society continues to modify its view of disability from being a condition to be fixed or avoided to being a routine aspect of life, it has been necessary to modify and reflect upon the underlying principles that guide disability related policymaking. Rather than designing policies that in the past created dependence, paternalism and lack of control, today’s policymakers are challenged to create policies that foster such concepts as self-determination, independence, productivity and inclusion. In order assist policymakers and advocates to create such policies, a disability policy framework has been developed that can "be used as a lens or guidepost to design, implement, and evaluate generic as well as disability specific public policies and programs to ensure meaningful inclusion of people with disabilities in mainstream society." (Silverstein 2000)

New models of service

In response to increasing costs, waiting lists for services, and lack of service coordination within and across systems, policymakers and agencies have been challenged to design more efficient and responsive ways to serve individuals with disabilities. Within Wisconsin, one of these new approaches is called "Family Care," and utilizes a managed care approach to design and provide cost-effective, comprehensive and flexible long-term care that will foster independence and quality of life. Family Care and other new models of service design and delivery present opportunities to participant driven, quality improvement processes but they must be monitored closely and held accountable for cost effective performance.

Policy-Related Activities at the Waisman Center

In order to address the Public Policy and Systems Change Area of Emphasis, the Waisman Center is currently involved in the following activities:

Pre-Service Training

Within MCH LEND and other undergraduate and graduate opportunities at the Waisman Center, the UCEDD provides seminars and applied field experience to assist students to understand how the public policymaking process is constructed and functions. The objective is to provide students with a basis level of information and skills so that they will recognize the importance of becoming involved in the policy making process and have some understanding of where to begin within that process.

Community Training and Technical Assistance

Advisory Group Membership: UCEDD staff and faculty serve on the following committees and boards relevant to this Area of Emphasis:

  • Survival Coalition of Wisconsin
  • Wisconsin Board for People with Developmental Disabilities
  • Council on Children with Long Term Support Needs - Wisconsin

Parents as Leaders (PALS) is a community training program that is conducted over four weekends per year and works to enhance the skills of parents who have a child with special needs to work in partnership with service providers, public schools, and community agencies. PALS is component of the Wisconsin Personnel Development Project funded by the Wisconsin Birth to 3 Program.

Research and Evaluation

The UCEDD is currently involved with the following policy related research and evaluation projects.

Wisconsin Medicaid Infrastructure Grant

Wisconsin Medicaid Infrastructure Grant is a federally funded initiative to develop sustainable policy initiatives that will support employment of individuals with disabilities. With funding from Centers for Medicare and Medicaid to the Wisconsin Department of Health Services, the Waisman Center UCEDD works in partnership with the University of Wisconsin-Stout, and the DHS Pathways to Independence Program.

Health Disaprities and Individuals with Developmental Disabilities Initiative

A collaborative advocacy effort with the Wisconsin Board for People with Disabilities, Disability Rights-Wisconsin, Arc-Wisconsin and others to bring attention to the need to acknowledge and address health disparities among individuals with developmental and other disabilities.

Financial Literacy

As one component within a larger financial literacy initiative funded by the Social Security Administration within the UW-Madison School of Human Ecology, the UCEDD is assisting to facilitate focus group to identify more effective ways of providing financial education to people with disabilities and parents/guardians to promote financial planning and savings.

Key References

Silverstein, Robert and the Center for the Study and Advancement of Disability Policy, Emerging Disability Policy Framework: A Guidepost for Analyzing Public Policy, 85 Iowa L.REV.1691, (2000)

Developmental Disabilities Assistance and Bill of Rights Act 2000, Public Law 106-402.


Last modified Friday 20th of October 2017 05:38:32 AM