March is Developmental Disability Awareness Month

My posting on The Arc’s blog.  I believe it is essential to come together and support a continuum of care.

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.

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