Spread Some Awareness in Your World

March is Developmental Disabilities Awareness Month thanks to a 1987 Presidential Proclamation which was the direct result of the advocacy efforts of The Arc.  A lot has changed since then: more people with intellectual and developmental disabilities (I/DD) are living and thriving in their communities rather than institutions, there are more opportunities in education and employment, more protections in health care, the legal system and other areas of human rights, there are more positive and accurate portrayals of people with I/DD in the arts, the list goes on. But we must remember that many of those advancements were hard won. Self-advocacy and advocacy on behalf of those with I/DD was the impetus for many of the positive changes in our society, such as the proclamation that recognized DD Awareness Month.

It’s up to you to continue to advocate for respect, access and inclusion of people with I/DD. Take advantage of March to spread some awareness in your world. Learn more about the issues concerning people with I/DD and The Arc’s position on those issues. Learn more about public policy that impacts people with I/DD and contact your legislator. Since many people with disabilities rely on publicly funded services to fully participate in their communities, policy makers need to know you are concerned about continuing those services in the face of budget cuts during tough economic times. And, get involved. Find a local chapter of The Arc and volunteer or donate. Together we can continue to make a difference.

7 thoughts on “Spread Some Awareness in Your World

  1. As a board member of the ARC for the River Valley in Arkansas I am so excited about this month! It is so important that we spread the word and continue to make a difference in the world by allowing individuals with intellectual and developmental disabilities to have a part in our communities. Let’s go March!

  2. Please, as one of the most well-known advocacy groups, and during this month of March which is Developmental Disabilities Awareness Month, begin to make a mindset change to include the needs of ALL people with developmental disabilities.

    The rhetoric and propagation of false information is frustrating. Congregate Care is ESSENTIAL for the health and safety of many of our family and community members and it is critical to maintain this continuum of care. Congregate care is the most COST EFFECTIVE way to meet the needs of many who need this level of care.

    Yes, it is true that there are very high acuity residents living at home. Yes, it is true that the cost of care for our residents with the highest acuity is expensive. No one is disputing those facts. But if we were to move all the residents who choose to live in the ICF/MR into smaller, community homes, the cost to maintain their health and safety will be enormous and rather than save money this will actually take away services from those who are already living in the “community.”

    Our facilities of today are communities and they are the community of choice for many. The Arc should start to advocate for ALL people with disabilities, not just the people who can advocate for themselves. This line that The Arc has drawn is inhumane and taking away this life saving choice for many is unjustified.

    When one chooses to live in an ICF/MR community, it does not mean that they are cut off from the rest of society – in fact, it is much the opposite. The ICF/MR is the least restrictive environment for many people and this allows them to be active in the community as a whole. The ICF/MR campus itself is also a community which promotes the health and safety of the residents.

    My request to all members of The Arc – Please remove the line that you have drawn in the sand between community and institution. In real life, this does not exist and only contributes to a “divide and conquer” mentality. I think of all the good work that could be done if this line was not there and my hope is that in the future there really will be advocates for ALL with developmental disabilities.

    • We appreciate your opinion and that you care enough about this issue to comment on our blog.

      However, we firmly believe people with intellectual and developmental disabilities have a right to live in communities and homes of their choosing and to be fully included with people who do not have disabilities. Certainly there are gray areas that call for discussion and debate as well as many challenges to overcome to make that possible. We realize that many do not have the services, supports and personal relationships they want and need to lead a full life in the community. Moreover, they often lack opportunities to participate in and contribute to their communities. That is what we are passionate about changing.

      We feel that with tailored and individualized supports and services all people can grow and develop in a home of their choosing, no matter how significant their disabilities. It’s that level of support, allowing opportunity, for which we advocate. We invite anyone who is interested in this issue to read our position statements on housing, living in the community, appropriate support and other factors at http://www.thearc.org/page.aspx?pid=2346.

      • Thank you, I am well aware of the position statements and I do not believe that The Arc follows their own mission statement – in fact, I see the direct opposite on several points.

        Your words – “we firmly believe people with intellectual and developmental disabilities have a right to live in communities and homes of their choosing” yet people want to take that choice away if the person chooses to live in an ICF/MR. How do you reconcile this?

        Our son, for instance, lives in an ICF/MR. He chooses that and even at his tender age of 17 he says he wants to live there. It really is the best place for him – as one who needs constant personal interaction – not just supervision but INTERACTION, living in a home with lots of people to interact with is what keeps him safe, healthy and oriented. Since moving to an ICF/MR he has not had to be hospitalized or medically/physically restrained at all. Prior to his move to an ICF/MR, he was hospitalized 5 times in just 1 ½ years. During those hospitalizations he was medically restrained with heavy doses of Thorazine. DDD had no place for him even though he had been on a Home and Community Based Service Waiver for years. The DDD Children’s manager and hospital professional staff told us there was nothing else they could do, we would just have to “call the police” if he had a crisis. He was 14 at that time.

        Living in an ICF/MR in no way inhibits his ability to be a community member. The ICF/MR of today is not the same as even 10 years ago.

        I, too, am passionate about including people with developmental disabilities in family and community life. Rather than focusing on what type of residence the person chooses to live in, I would like to focus on taking everyone and helping them participate and contribute to their community. Taking the focus off the person and putting it on the residence wastes money, time and efforts that could really help in advocating for ALL people with disabilities.
        I will continue to be passionate about allowing people to FREELY CHOOSE as opposed to choose only what my ideology imposes on them. I feel badly about this due to the fact that The Arc does do so much good but due to this one policy which directly hurts so many, I cannot support the actions of The Arc as an organization. I will continue to point these issues out. The Arc does not advocate for ALL people with developmental disabilities but only those who stand on their side of the line in the sand.

        • It sounds as if your son is happy and that makes us happy. We don’t wish to “draw a line in the sand,” but we do feel it is important to communicate our vision of what we would like to see happen in a more perfect world. Those positions are, by necessity, a broader statement about the general issue. We respect that each invidual’s circumstances are unique. We sincerely appreciate you sharing your valuable perspective. This is exactly why we post items such as this on our blog…to encourage conversation and debate. And, to earn more about how people feel about these issues.

  3. I am a Nurse Practitioner in the Northeast and am currently in a class looking at the needs of special/vulnerable populations. I am interested in learning more on the personal experiences, both good and bad that patients with intellectual disabilities may have had when hospitalized and what they or their families feel may have been done to make an experience better? More resources? Better understanding from the health providers? Social work involvement? I am looking to try to improve the care that is received when in the hospital setting. My goal is to bring more awareness and understanding where I work. Any information you can provide or share would be greatly appreciated. Thank you.

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