As I sit here, fingers poised over my keys, writing a blog about COVID-19, I find myself having some difficulty deciding exactly what to type. I go back to MDDC’s mission “MDDC is committed to creating a Maine in which all people are valued and respected because we believe communities are stronger when everyone is included.” So, what does that mean right now during a time of social distancing? It comes down to two ideas. First, we need to keep advocating for the value of people with DD being connected in and with the community. Through that advocacy we will help to ensure that should people with DD, their families, and their caregivers get ill – their lives are valued at the same level, with the same urgency as everyone else. Second, we need to adapt and change our definition of community.
Our world is dealing with a new illness the likes of which humans haven’t come across before. That, in itself, is not new. Humans have done this before. But this time, the virus spreads very fast. No human beings, except perhaps those who have recovered from COVID-19, have any immunity to this disease at all. We are essentially playing a waiting game. The waiting game has a name: Social Distancing. The objective of the game is to buy time. Losing the game means our hospital systems get swamped and more lives may be lost. But winning the game means we get time and the hospital system is able to care for us. Winning means we get time to develop medicine to help us. Time to develop a vaccine.
So during this time of social distancing is community eliminated? No, it is not healthy to socially disconnect. We need to change what it means to be a part of the community. MDDC is using some of our funding to purchase and disseminate computers to individuals with DD so they can stay connected remotely. Like everyone else is right now – community is happening on the internet. MDDC is partnering with others to provide Technical Assistance so that people with DD can learn to use online social video platforms. Keep an eye out for more information as MDDC finds ways to help people adapt to this new type of community inclusion.
It is also important that people who care about DD related issues remain steadfast and ensure that when people with DD, their families, and their caregivers get sick, they are cared for. Advocacy is critical. My guess is that people aren’t thinking much about people with DD. Not because they are insensitive! But because this whole situation is overwhelming to everyone! The gift of asking questions and speaking up about people with DD is that other people who are trying to think about every scenario will gain a point-of-view that they didn’t have. To get through this we need to stay connected. Ask questions. Wonder out loud. We are all really in this together.
Block Grants for Medicaid – Not a Solution for People with Developmental Disabilities
A paramount shift in Medicaid policy is occurring without the option of public discussion and debate so central to our governmental structure. On January 29, 2020 CMS Administrator Seema Verma sent a letter to State Medicaid Directors detailing the “Healthy Adult Opportunity” (HAO) policy. The administration is doing this under Section 1115, which allows for Medicaid pilots. The HAO would essentially allow States the flexibility to cap eligibility, costs, and services for individuals who became eligible under Medicaid Expansion. It is an exceptionally dangerous precedent to allow capping, or block granting, any section of Medicaid. We are especially concerned about this as there was no opportunity for anyone other the administration to vet the initiative.
The Maine Developmental Disabilities Council (MDDC) is a federally and state funded partnership of people with disabilities, their families, and agencies which identifies barriers to community inclusion, self-determination, and independence, and acts to effect positive change. MDDC acts to effect positive change through advocacy, capacity building, training, demonstration projects, and support for other inclusive and collaborative systems change activities.
Maine Developmental Disabilities Council is committed to creating a Maine in which all people are valued and respected because we believe communities are stronger when everyone is included. Our purpose is to promote systems change to ensure that all individuals with developmental and other disabilities are able to live and fully participate in their communities of choice. Working in partnership with people with disabilities, parents, advocates, and policy makers, MDDC works to promote the independence, integration, and inclusion of all people with disabilities through advocacy, capacity building, and systems change activities throughout the state of Maine and on the national level.
So, what does that all mean?
Working at the DD Council, we focus a lot on advocacy. Governmental advocacy, self-advocacy, family advocacy (you get the picture). We may think about advocacy as something that takes a lot of time (going to protests!) or expertise (arguing with lawyers at the legislature, writing brilliant policy proposals).
The dictionary says that advocacy is *the act or process of supporting a cause or proposal*. It’s a means to solve a problem; actions that are intended to have a particular outcome.
On one hand, it’s simple: advocacy is action, usually indirect action. By “indirect”, I mean that the action itself doesn’t directly solve a problem.
Advocacy can be individual or systemic.
With this dispatch, the Maine Developmental Disabilities Council is undertaking a new effort. We recognize that Things. Have. Changed. For people with developmental disabilities and their allies, there is a lot going on that can be confusing and even frightening. For many years, we’ve done most of our work in more traditional avenues of advocacy. But times have changed, and we want to take advantage of these new opportunities to amplify the work we do and that our partners and collaborators do.
Over the next weeks and months, we’ll be trying a couple of different formats to see what you like and what’s most helpful to you. Our goals are to:
There are already a lot of Maine people and organizations out there doing great things. We do don’t intend to “re-create the wheel” but may tell you about some of their work related to developmental disabilities.