Speaking out for People with
 Intellectual and Developmental Disabilities

A Letter to the Medically Fragile Subcommittee of the Legislative Task Force on the Regional Centers in Colorado:

As the Legal Guardian for a long-term resident at the Wheat Ridge Regional Center, I am well aware of the evolution of services at the regional centers in Colorado. Yes, the regional centers used to be all of the stereotypes of an institution, however this is no longer the case. The regional centers of today, in Colorado, have evolved into community living, with centralized services that are the best of both systems. To keep saying that the current residents of the regional centers deserve to move to the community is blatantly contrived. The regional center residents are already living in individual group homes, in neighborhoods where you live. They have the choice to receive medical services at the regional center or in the community. If you really think that these residents would benefit from moving from the regional centers, please be specific in defining how their lives and services, in reality, would be any better. I would be surprised if you could think of one that is legitimate, because in reality, the Community Centered Boards (CCB) group homes are no more integrated in the community than regional center group homes. Since the regional centers and CCB/private run group homes have the same level of community involvement, what is your real motivation for wanting to close the regional centers? This is not a rhetorical question, please define what your actual motivation is for wanting to close the regional centers, because freeing them from the institution is no longer a valid argument.

What the individuals with DD will be losing if the regional centers close, is a full team of medical, therapy, and other professionals who know them well and are involved with them on a regular basis. This allows the professionals to anticipate potential problems, recognize changing needs immediately and to change the treatment plans in a timely manner to ensure their best health, safety and comfort. It is common for these individuals to have changing needs that if unmet can result in suffering or death from skin breakdowns, aspiration pneumonias, and bowel problems. It is rare to have skin breakdowns in the regional centers. It is common to have skin breakdowns in the CCB/private run group homes according to the CO State Health Department. Having nonprofessionals decide when to hire a professional for a one time assessment and treatment plan is far from best practice and is inferior to full team, year-round, active support. Parents of residents in the CCBs should be demanding this level of support for their individuals with complex needs. It is also difficult to find professionals in the community who are familiar with this population and know how to assess them properly. Most of them will be discouraged from continuing to serve this population once they get billing denials, which is common. It is also difficult to get as customized adaptive equipment in the community, as can be designed by regional center therapists and fabricated in the regional center equipment technology center.

What this task force should be focusing on is how to get better consistency of care for each individual, no matter where they live. Having stable, well-trained, long-term staff with less turn over is a key component of consistent care and active treatment. There is no substitute for that. We fight so hard to keep our loved ones in the regional centers because the regional centers do have a solid core of long-term direct care staff and professionals dedicated to care for our loved ones. Until your CCB/private services are legitimately better than regional center services, please stop trying to do us a favor, that we don't want, for obvious reasons. When your services are superior to the regional center services, we will be demanding to move into your CCB/private run group homes. That would be a legitimate choice, in the true spirit of Olmstead!

Reggie Biccha (Executive Director of Colorado Department of Human Services) said that the individuals who have lived in the regional centers long-term should have the choice to remain in their homes with their familiar friends, peers and staff. In some instances this is their only family. I hope this reasonable choice will be honored long-term, as having been threatened with community placement for years has been unnecessarily stressful for families.

Please do the right things, for the right reasons. That is all we ask.

Thank you,

Wendy Sime