Storm Clouds on the Horizon
Note from JWB: I have turned over this edition of Bark’s Bytes to Jim and Karen Clapper who are parents of a client at Merrick. Jim is on the Board of another DT&H program and both are very concerned about some of the system changes they are seeing on the horizon. As part of their discovery process, they asked to meet with me in January that led them to write this article. I hope hearing a family’s perspective on these potential system changes provides some balance to the discussions and something you will share with others in your network.
Our son, Bob, has been a client at Merrick, Inc., a Day Training and Habilitation (DT&H) provider for the past six years and currently performs work at the facility. We have been impressed with his development at Merrick and really appreciate what the staff has done to facilitate and enable his growth. He enjoys his work, but more importantly, he takes pride in earning a paycheck every other week. We have been very grateful for the Medical Assistance (MA) waiver funds that enable Bob to have this opportunity.
During the past two years, we have worked to establish an independent housing option (IHO) for Bob. On May 1, 2013, he moved into an unlicensed IHO with two other young men with disabilities under the care of a residential services provider. We are very grateful for the MA waiver funds that enable Bob to live in this setting, and for all the support we received from our Ramsey County case manager and the residential services provider. His development had plateaued while living at home, but we now see him making progress again in his skills and teamwork in this new long-term living arrangement.
As we have started to feel comfortable about his living and working situations, we are learning more about several changes that appear likely to impact Bob in a very negative way. The Olmstead Plan in Minnesota is shaping up under the direction of a subcabinet commissioned by Governor Dayton. In fact, the Minnesota Department of Human Services (DHS) has been firmly directed to get this plan developed with specific and measureable goals per the Jensen Settlement. From what we have read, the judge was disappointed with the lack of substance in the plan and told DHS to go back and try again. The intentions of CMS (federal office that administers MA waiver funds) are very clear. They do not intend to continue funding segregated programs in the future nationwide. A handful of states have already closed sheltered workshops and DT&H centers for this reason! The Home and Community-Based Services final rule requires Minnesota to come into compliance by March 2019.
All these initiatives and rules seem to have some common themes, which are very disturbing and represent a huge threat to the future happiness, stability, and growth of people with disabilities. Anything that looks “center-based” appears to be very bad; the new buzzword is “community-based.” The situations that Bob currently enjoys also appear to lack “integration” and are now considered to be “segregated.” Another theme, “employment first” seems to suggest that all people with disabilities should be employed in the community, working 30 – 40 hour work weeks, and earning the same wages and benefits of non-disabled employees completing the same work. The current thinking is that when a person with disabilities comes out of a school transition program, competitive and integrated employment MUST be implemented and have failed before any type of day services can be considered.
John Wayne Barker, Executive Director of Merrick, Inc., met with us on January 29. Unfortunately, he validated all of our concerns; these things are real and are heading our way.
After all of our work, and the work of many other people, Bob could end up with no DT&H program to go to everyday. He does not have the capabilities or even the interest in working in a competitive integrated job. So much for “Person-Centered Planning”! His alternative may be to sit at home if his DT&H program is shut down. What about his waiver funds that pay for residential services? If his current IHO does not pass the test of being community-based and integrated, where does he go?
Darlene Zangara is the Executive Director of the Olmstead Sub-Cabinet and will meet with families from 6:30 – 8:30 P.M., on Wednesday, March 4, 2015 in the Commons at Merrick on 3210 Labore Road, St. Paul, MN 55110. We will be there, front and center to hear more clearly about the Olmstead Plan and how we can help shape it so that our fears are not realized. What I know about the plan just does not represent who we are as Minnesotans. We hope to have a good turnout at the meeting and only have room for 100 so please RSVP through John Wayne Barker at firstname.lastname@example.org. DT&H service providers like Merrick can do only so much to influence the State. It is vital that parents and guardians get close to these initiatives and let our state and federal officials know that we cannot accept many of these concepts and plans.
Jim and Karen Clapper