2015 has marked the 25th anniversary of the Americans with Disabilities Act (ADA) and the 40th anniversary of the Individuals with Disabilities Education Act (IDEA). SERC, as an organization that has a vision for equity in education, would like to honor these two anniversaries by highlighting a statewide conference called “Building a Great Life” on October 2 & 3, 2015. This conference will earmark these anniversaries as critical events.

The conference has been coordinated by Molly Cole, Executive Director of the Connecticut Council on Developmental Disabilities. As a leading provider of special education assistance and resources for 46 years, SERC wanted to share Molly’s own personal and long-term perspective on ADA and IDEA. Smita Worah, Ph.D., a consultant in SERC’s Technology in Education Initiative, sat down with Molly to learn more. In the interview, Molly spoke about the impetus behind the conference, her many years of advocacy, her late daughter, and what has and still needs to change for young people with disabilities.

SW: Molly, can you tell me something about yourself, and how did you get into this field?

MC: Sure. I got into the field because I am the parent of three children; one of them had significant developmental disabilities. [It was] back in the ’70s when there were not many services, so I [worked on] a lot of advocacy and family support issues, both in Connecticut and nationally. I felt that this was my calling. It was a civil rights issue, and back then we had a lot of work to do as there wasn’t adequate access to things that were granted by law.

I have worked at various organizations in Connecticut, like the [University of Connecticut] A.J. Pappanikou Center for Excellence in Developmental Disabilities, prior to my present responsibilities. Moving to my current position [in 2011] was an easy shift, and it was an opportunity to shape policies and other things that were not possible under the University.

SW: What are your outcomes and hopes for the conference?

MC: So when we look at these two magnificent pieces of legislation – 40 years of ADA and 25 years of IDEA – they have done wonders both nationally and in Connecticut, in terms of civil rights. But now it is time to put them into action with a renewed sense of purpose to assist people in thinking, what’s in my backyard? What’s in my community? State and Federal directives can only do this much. It is people in communities working together to bring about real change in lives of people. We need to ask and be aware of what’s in the community, and how can I use the resources to give a better life to our children and adults with disabilities? The hope for this conference is to move further towards “building a great life” for our children and adults with disabilities.

SW: IDEA and ADA changed the lives of people with disabilities and in particular developmental disabilities. What are the most significant achievements of these two laws?

MC: IDEA not only provided access to education, as prior to this there was minimal access. In the last 25 years, IDEA has moved from just “education” to quality education and regular education for students with disabilities. We have moved from segregated education to more inclusive education. IDEA has given people a vision for themselves, for their children, that they didn’t have [before]. We know that we have a very long way to go in special education, but when we look at IDEA, we have come a long way, too. Our children have rights that they did not have [before IDEA].

With ADA, we recognized civil rights for people with disabilities. We [had already recognized] civil rights for people of color, but prior to ADA we did not recognize the civil rights for people with disabilities. What ADA has done is that in communities, in the workplace, [it] has encouraged people to think about true inclusion, changing things in a positive way. We recognize that there is a lot more to be done, but ADA has opened up opportunities for people with disabilities that did not exist earlier. ADA has elevated the conversation of rights to a different level.

SW: All individuals with disabilities do not have the same resources. What in your opinion can and should be done so that people with disabilities are valued and accepted?

MC: I agree, all people with disabilities do not have access to the same type of resources. People with disabilities have a high poverty rate, a high unemployment rate. We are spending a lot of money on special education, but is it providing us with the outcome of “a better life”? What are our students with disabilities doing after the age of 21? There are other populations of our society who are marginalized as well. We want a better life for everyone. We are not there, where we want to be.

SW: How can we work together to achieve equitable outcomes for people with disabilities?

MC: To achieve this, the disability community needs to build partnerships with other communities who face other challenges, [such as] entities like the Urban League. We as a disability community have only allied ourselves with other groups of people with disabilities, when in fact we have a lot in common with other marginalized groups. We have more in common with them then we realize. We have to make connections and get better at our outreach so that we address similar issues. If we look at other groups, then we will realize that they are much more adept at systems change then us as a disability community. We have a lot to learn from other communities, and this can only be achieved through active partnerships.

SW: I know that many things have been achieved, and the U.S. is ahead in many ways when compared to other countries when it comes to laws for people with disabilities and their implementation. But there are disparities…?

MC: Even though the U.S. is ahead of many countries when it comes to the rights for people with disabilities, the U.S. is not willing to endorse the U.N. resolution [on the rights of persons with disabilities], and it’s a political game. It’s not any one particular issue [preventing its passage in Congress], but rather a partisan disagreement. The disability community needs another champion both in the House and Senate.

This conference is celebrating where we have come and also where we have to go. We have an expectation of something bigger. We need to figure out how to get there….and it’s not unachievable in this country. It’s a big task, and we have to get there. Systems change takes time and a lot of patience.

SW: What can we do to make it a more accepting society?

MC: The Council has talked a lot about this issue both locally and nationally. [Each state, the District of Columbia, and U.S. territory has a Developmental Disabilities council.] The DD councils talk a lot about real communities and the recognition that there are many things that real communities can do to embrace all their citizens: including people of color, people from different socioeconomic backgrounds, people with disabilities, the aging population, etc. We are not exactly an inclusive society. Having curb cuts [small ramps on street curbs to ease access to the street and sidewalk] does not necessarily make us an inclusive society. On the one hand we have these curb cuts, but on the other hand, individuals may not be engaged in their local churches. For example, you may have a community garden that is not wheelchair accessible. How is that a “community” garden when certain populations are not able to access it? To be a more accepting society, we need to value all its members.

Individuals with disabilities are often seen as takers and not as individuals who have something to share, to contribute. The DD Council has talked about assisting the general public in recognizing the gift that people with disabilities bring – recognizing that everybody has something to contribute – and that is part of belonging. The DD Council looks for civic opportunities where people with disabilities can participate and contribute. These opportunities do not have to be disability specific, but can be the county fair or any other community gathering where all citizens are valued and have the possibility to participate.

SW: Can you expand upon the interdependence between the disability community and their nondisabled counterparts?

MC: One aspect of interdependence is economics, but it is just one aspect. Interdependence is finding the gifts that people bring and valuing them. In fact, you must value the gift of all the members of the community to be a true community. Sometimes these gifts are not obvious, and they may need to be figured out. Healthy communities value all their citizens. Disability is not an exclusive club, and communities need to recognize this. So it is vital that communities value the gifts of all their members. People with disabilities need the services and supports, but they also need to be part of the communities in which they live.

SW: Let’s talk about the transition from IDEA to ADA. Do you think families are prepared for it? How can families and young adults be assisted in this process?

MC: The transition is difficult, as all of sudden, after the age of 18 or 21, young adults and families feel as though they have fallen off a cliff. Suddenly they are sitting at home. The DD Council focuses on encouraging young adults to become advocates for themselves in family activities. Young adults need to be able to shape their own future, take on leadership roles, and think about what they are doing.

The DD Council is supporting a youth leadership initiative KASA (Kids As Self Advocates) and the development of all-ability alliances across school systems. The all-ability alliances across school systems [in Connecticut] is the first of its kind in the country [and] was an outcome of the Governor’s initiative on anti-bullying and improving school climate. This was created as the need for students to take leadership was recognized.

The future of youths with disabilities [moving] into successful adulthoods lies in our willingness to develop their leadership skills and in helping their families understand that their role changes over time. Children with disabilities need that level of independence and growth like their nondisabled peers. Some families find it very difficult to let go; they get into that advocate role and struggle to find a balance. Youth with disabilities need to be encouraged to take the first step and have the confidence and leadership skills to want to be advocates for themselves.

Youth need adult allies to assist them to do whatever it is they want. It is a difficult transition, but we need to help our youth develop leadership skills and form relationships with allies who may not have disabilities and can support them.

Youth with disabilities should be allowed to take risks. There is no magic formula. Youth with disabilities need to be exposed to risks, [but] at the same time have allies that will support them.

SW: What supports do families and children/youth with significant disabilities need?

MC: Families and youth with disabilities need to be comfortable and be encouraged to take risks. I would fall into that category.

My daughter had significant disabilities. I have often thought about what my daughter’s life would be like [today]. Life is all about taking the tenet of risk. I personally realized that I was being too protective towards my daughter. We had to allow her to take risks. She was being homeschooled, as she had significant challenges. We realized the significance of risk taking and decided that she needed to go back to school, to take her place in the community. It was not easy, but my family, allies, and educators made it happen and the community got to know my daughter and vice versa. We have no regrets, as that was a great life for my daughter.

So what you need is supports, you need allies, who will walk the walk with you, who will be willing to take risks, who are willing to make it work even though it puts them out of their comfort zone. Of course, one needs the formal services – the finances above all, [and] you need people around you who are willing to walk the walk with families and children/youth with disabilities, and make mistakes. There is no formula, no [formal] path.

SW: Where does Connecticut stand in providing services? How does it compare to other states?

MC: In some aspects of service delivery, we look good. If we look at the data, we look good. [But] some of it does not look so good. The DD Council is working to close the institutions [for individuals with disabilities] in the state. There are about 15 states that [already] do not have institutions. Connecticut spends a lot of money on these institutions. And there are many individuals on waiting lists [for services] to live in their communities who may not get it. [Meanwhile,] Connecticut is spending a substantial sum of money on institutional care.

In some ways, Connecticut is ahead of other states, but in some ways it is woefully behind. A lot of money is being spent, but not necessarily to enable all individuals with DD to lead a great life. There are many advocates in Connecticut and across the country who agree a lot has been done since the passing of IDEA and ADA, but they are disappointed that we are still fighting for enforcement. We know that the outcomes for people are better in the community, and yet we are hesitant to explore this option fully.

We need the political will to accomplish this. We have the 2020 campaign – that is, to close institutions by 2020. It’s a political-will question. We cannot do this until we have a plan, until we build capacity, as we want people to succeed. It can be done! I find it very hard to say Connecticut is doing well, when we have six institutions that are costing a lot of money, money that could have been spent to keep people with disabilities living in their communities.

SW: How can families advocate ensuring that individuals with disabilities reside in their communities?

MC: Families need to arm themselves with the right information to refute the false ideas that are prevalent. There are a number of parent organizations that can assist. One group that has been very active is Families for Families, run by The Arc of Connecticut. They are focused on closing up the institutions and are a primary partner in our 2020 initiative.

One has to be willing to advocate for people with disabilities so that they can live in their communities, to meet with legislatures, to refute the argument for institutionalization. It is necessary to change minds and this sometimes is slow, one person at a time. Advocacy work is a lot of work and not for the fainthearted, but the rewards are tremendous.