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