Lori A. Ropa, CAE, Executive Director

“It’s hard to understand how someone could be so smart and yet still not be able to do the simplest of things.”

“My son has autism and an IQ over 100, but had to drop out of school because he couldn’t handle being in the classroom.”

“What will my grandson do after high school if he cannot read above a first grade level and there are no services available for him?”

This is the kind of deeply personal testimony we heard at the Public Hearing last Thursday regarding the proposed rule changes (16.120 and 16.420) that would bring clarity and consistency around the implementation of the State’s definition of someone with a developmental disability.

But the crowd was small – perhaps fewer than 50 people came to Ft. Logan to let the staff from the Department of Human Services, Division for Developmental Disabilities know how they felt about the inequities in the system. While representatives of families, advocates, professionals (medical and I/DD) all testified, we lacked strength in numbers. Our words were powerful, but our presence was weak.

As I started to write this article, I had every intention of writing an in depth story about the testimony and the need to make these rule changes today. After thinking about it and reviewing our Arc history article for this issue, I’ve chosen a very different path – one that relates more to our engagement than to a specific rule change.

The Arc has been a powerful movement and we must continue to constantly push forward. Our entire history is comprised of one effort after another to create positive change. For decades, parents came together and worked hard, not only to serve the needs of their own child, but to serve the needs of all people with developmental disabilities. As adults were being warehoused in institutions, we fought together to bring them into the community. As education was being denied to some children, we worked together to create the changes that gave access to all children. We understood the need to ensure lasting changes that would improve the lives of all people with I/DD.

But our work is not done. We still need the power of the movement to continue to push ahead. Today, there are many people who should have access to services and supports and they are left with nothing. What are we doing today, both individually and collectively, to ensure that all people with I/DD get access to the supports they need to ensure a successful, fulfilling life in the community? The power of The Arc has always been in having members of our Arc community advocate, and not simply leaving it to the “professionals” or those who had a specific, personal interest in a particular change. We know what is right, and we need to continue to work together to create the changes that matter in people’s lives.

And that brings me back to the proposed rule changes. State law clearly states that a developmental disability can be defined by intellectual functioning OR adaptive behavior. The initial rules, and later the emergency rules that were developed to implement that law, are far less clear. They leave room for interpretation and that has caused many people to be denied services based on their IQ scores alone being too high, despite their adaptive scores being much lower.

This is wrong. We all know it’s wrong – and we must act.

Written comments on the proposed rule changes are being accepted until May 20th. I urge you to get involved. Be a part of the change. Help our State understand that it is important that they act now, and not wait for any reason.

You can send written comments by e-mail to Shari Repinski at the Division for Developmental Disabilities at shari.repinski@state.co.us – be sure to put “Rule change” in the subject line. Or send her a letter: Shari Repinski, DDD, 4055 S. Lowell Blvd, Denver, CO 80236. You can also call 303-866-7465 or 1-866-504-9734 and leave a recorded message.

If you have questions, would like some help in drafting your comments, or would just like to discuss the issue, please feel free to contact me at lori@arcjc.org or 303.232.1338.

The time is now. Please, get involved.