This week I had the opportunity to interview someone at a local organization that serves adults with developmental disabilities. I am excited to share it here, because I feel that even as adults, we are all continually learning. Therefore this is very relevant to what I do and how I feel about education. Keep on learning…. Michelle

The Arc for Boulder and Broomfield counties is called The Association for Community Living in Boulder County. Nicole Newsom is the Director of Activities for this organization and also serves on committees for several organizations that focus their services for people with developmental disabilities.

Michelle: What types of services does your organization offer?

Nicole: Our organization provides advocacy services for both adults and children. We are also involved in public policy, informing the public the implication of the laws made at state and federal level for families and individuals with developmental disabilities. Finally, we also provide classes to the community in order to promote a sense of community between those with and those without developmental disabilities.

M: Why is this important to adults with intellectual disabilities?

N: Some of these adults are unable to advocate for themselves. Often they are unaware of their rights and therefore need a voice to speak for them to ensure they receive services and have a positive quality of life. Also, our facility offers them a safe place to learn and meet people.

M: What social issues do you see in your outreach to adults with intellectual disabilities?

N: There are many social issues including isolation, sex education and parenting. These issues are all things we try to address through our social and educational opportunities. Another issue is the quality of care in those providers that serve people with developmental disabilities. Unfortunately there is little supervision or follow through from the state to ensure these providers are providing quality services. Finally, the biggest issue I see is the lack of funding. Here in Colorado there is a long wait list just to get the services that these people need to survive.

M: What perceptions do you think society has with regards to adults with disabilities?

N: I think most people get a picture of the smiling Down syndrome child in their mind when they think of developmental disabilities. However, the diversity is expanse and this picture does not encompass the entire population by any stretch. Another perception is that these are not normal adults and therefore, must be treated differently. Sometimes, I find myself attending doctor’s appointments with an adult with developmental disability as a friend, to support them. It is frustrating for me and the adult with developmental disability when the doctor starts talking to me rather than addressing them directly. It is as if the doctor doesn’t believe that adult can understand anything he is saying.

M: How do you feel that your organization can change those perceptions?

N: Modeling is one of the best ways to do this. We try to model appropriate interactions with these adults in the community, at meetings, in classes, and at the doctor’s office. We hope that by modeling these things others will learn that the interaction with these adults is not much different than what they are used to with their friends, families, and co-workers. Another way we change perceptions is through public policy.

M: What ethical issues do you deal with in your work, with regards to adults with intellectual disabilities?

N: Monitoring care is a big issue. Another issue is guardianship and knowing what level of assistance the individual needs. The final issue is human rights, because sometimes you have to suspend an adult’s rights in order to ensure they are safe and healthy.

M: How do you feel those issues impede the process of assisting them?

N: Without monitoring care, there is no way to be sure that abuses are not occurring within organizations that serve these people. Guardianship is important as a layer of protection to prevent these abuses and to ensure that the individual’s needs are met. As for human rights, it is important to ensure that when rights are taken away that a clear path is provided to the individual on how to obtain those rights again.

M: What ways do you suggest to overcome these obstacles in order to provide the best service to meet the needs of adults with intellectual disabilities?

N: More funding is needed. Many people who work with organizations that serve adults with developmental disabilities are over worked and under paid and it is common for turnover to be high. Also, it is very important to teach self-advocacy skills to these adults. The more they know the more power they will have to protect themselves from others and to navigate the system to make sure they access all the services that are available to them.