If anything can be described as “equal opportunity,” it is developmental disabilities (DD), which affect 4.5 million Americans of all ages, religions, ethnic backgrounds, economic status, and political affiliation. A developmental disability is one that seriously limits a person's everyday living activities, mentally or physically, or both. It may be obvious to others or invisible. It is usually diagnosed some time in the first 21 years of life and is almost always permanent.
Until 1970, people with developmental disabilities and their families had few options. There was little awareness of what they were experiencing or many place to turn for help. If families were unable to keep their children or loved ones at home, often they had no choice but to place them in institutions. In 1970 a groundbreaking piece of legislation – the Developmental Disabilities Assistance and Bill of Rights Act – created a system of state councils designed to help people with DD live with dignity as productive, independent, and integrated members of their communities.
Karen Flippo, executive director of the National Association of State Councils for Developmental Disabilities (NACDD), believes that DD councils have changed communities by making them more vibrant and livable for everyone. “The councils help people live fuller lives, navigate the confusing maze of agencies and community organizations, and make choices about issues that affect them.” Flippo was named executive director of the NACDD when it was formed in 2002. The association plays multiple roles, including serving as a voice in Washington for people with DD and their families.
Advocating for the continued reauthorization and full funding of the Developmental Disabilities Act is NACDD's number one priority at the moment. “If the act is not authorized this year,” explains Flippo, “it will roll over for another year at the same amount of money. If it is never reauthorized, there would be no state councils, but I do not see that happening. The DD Act has always enjoyed bipartisan support. It has been a hallmark of disability legislation and the basis for many other disability-related laws. ”
As with most domestic and discretionary programs, the councils' challenges have increased in the last few years, and they are receiving less money than in the past. Some have had scale on back programs; others have cut staff. “At the same time, there have been some fascinating projects and new cooperatives formed within the states,” says Flippo. “And by virtue of state funding, the councils are still extremely viable.”
What makes the state councils unique is both their mandate and their membership. Council members are appointed by rulers to represent and advocate for people with DD in their states. They have broad authority to set priorities and work towards public policies that provide self-determination, inclusion, and assimilation of people with DD. With the exception of the executive director, all of these people volunteer their time; and at least 60 percent of them have developmental disabilities or have family members who do.
The NACDD board is made up of representatives of various state councils, many of whom wear two hats. Becky Harker, NACDD president, is one of them. As board president, she is a volunteer who helps to set policy for the national association; as executive director of the Iowa Governor's DD Council, she oversees a staff that carries out policy. “As a national board member, it's easy to fall into micromanaging,” she says, “but our job is to make policy, not to implement it.”
Harker feels the biggest challenge the national and state councils face is finding ways to work collaboratively with other organizations that serve the same population. “In the world of disabilities,” she explains, “there is an intense competition for limited resources and a tendency to divide things into categories: mental, physical, and developmental. at functional needs rather than categories or diagnoses – we would see the commonalities. We would see people for whom mobility is an issue and people for whatever employment or education is an issue. ” It is the challenge of the puzzle that intrigues her – first, looking at the whole picture and, then, determining the pieces where the council can make a difference.
One of the major strengths of the DD councils is their ability to take a wide-angle view of the needs in their individual states. “We're involved across all life areas – employment, education, health, housing – so we tend to see a bigger picture,” Harker explains. “We can connect the education people with the employment people because we walk in both worlds. We can create links between various agencies and groups that may have similar results but have not really talked to one another.”
The DD committees have led the way on many issues, especially those concerning self-advocacy, which has always been part of their core mission. Since the self-advocacy movement has gained strength in the last decade, one of their principal goals now is to shift that lead to the people who are directly affected by disabilities. In Iowa, for example the long-term vision of the DD Council is to be responsive to what advocates need in terms of research and support.
“There are many people with developmental disabilities who do need help advocating for themselves,” says Harker, “and that's why family members are a part of the DD committees. “Even with simple choices, people really do have preferences and should participate in the decision-making process that affects them.”