TESTIMONY OF MARILYN HAMMOND

To: House Social Services Budget Committee

From: Marilyn Hammond, Parent and CLO Board Officer

Date: March 18, 2009 RE: Special Tier Funding Approved for CLO

Chairperson Mast and members of the Committee, thank you for the opportunity to testify today regarding the Special Tier funding received by Community Living Opportunities, Inc. (CLO).

Because of my son David who is severely disabled, I have a special interest in this issue. I feel compelled to shine some light on the other side of the story because this is not about politics. It is about meeting the needs of people who happen to be severely and profoundly disabled and providing the appropriate support to the direct care staff that serves their needs day in and day out.

My connection with CLO goes back almost 35 years. I am attaching an article about those early years to give you some insight into that history, and I can then go directly to address the concerns of today. It is important to note that CLO came into existence because David and others with severe disabilities were rejected by Johnson County Developmental Supports (JCDS), then known as Johnson County Retardation Center. That agency is still rejecting the severely disabled, and yet they cry foul when CLO is awarded Special Tier funding that is absolutely necessary to meet the needs of people with highly challenging behaviors that are served by CLO.

My son David needs fed, dressed, diapered, and lifted all day long. In the last six months, David has spent a total of four weeks in the hospital with pneumonia precipitated by aspiration. Two weeks ago, a feeding tube was placed in his stomach because he can no longer be fed by mouth. The staff at his home welcomed him back, and CLO stepped right in to train and support the staff in supplying David with nutrition in this new way. They all want to do what is best for David, and they will meet his needs even though they are challenging. Each day he is up and out participating in life in his home and the community. Another important point to make here is that during this time in the hospital, CLO loses all of the funding for David. If he is not in the home, they do not get the money, but their expenses go on anyway. With a number of medically fragile consumers, CLO frequently loses large sums of revenue. One last point I would like to make about David’s hospital visits is the repeated comments from the hospital staff about the amazing care that David has received over the years. Doctors and nurses marveled that a person with his disabilities would be is such great shape!! Thank you CLO. David lived at home for 22 years and has been in the care of CLO for 23 years.

Truly, I was stunned that anyone could think that CLO got this Special Tier funding because we are “politically connected” or that we serve “the most elite!” First of all, we are and always have been a Board made up primarily of parents and professionals in the field, and we have not benefited greatly from the abundance of community and political support surrounding JCDS. Perhaps, if we had been “politically connected” we would not have been repeatedly turned down by the county run agency when we have requested this much-needed funding. We received this funding because professionals in the field (SRS) have toured our program, met the people we serve, and read the data presented. They realized and understood the desperate need. SRS funded us because there is a legitimate, urgent, and documented need that has been overlooked for too many years. Yes, Larry Gates and Dan Biles have been incredible advocates for people with severe and profound disabilities for over 25 years. Why would that be a problem? We are thankful for them and hope they will continue to stand by our sons and daughters in the years to come. Yes Lew Perkins is a newcomer to our board, and we are grateful for his interest, but it was completely disingenuous to throw in his picture and name in the paper as though it made any difference to this issue. As far as serving “the most elite,” I just ask you to please come and walk with me through the homes where the people of CLO are served. Please come and visit some of the 43 people for whom this money has been requested. Please meet my son David. You will know then that CLO is serving the most vulnerable people in our community with graciousness and loving care. Also, meet the dedicated direct care staff that work with our sons and daughters in challenging settings every day and night. As I tell many of my friends, here is where your tax dollars are being spent in the most effective and compassionate way and in a way that should make you proud.

Finally, I would suggest looking into several concerns relating to this. First, why should the CDDO get millions of county dollars every year while CLO and the other county service providers get nothing from the county? Second, why is the CDDO allowed to continue being both the gate keeper of the applicants and the money as well as being a service provider in competition with the other service providers under its control? This is a huge conflict of interest! Third, why was only one side of this issue presented in the news articles, the side of the paid lobbyist representing the CDDO? Why did the reporter not visit with parents or board members of CLO, and where did he get his information? Finally, why did our CDDO turn CLO down repeatedly for special funding when they of all people should know that we are serving the people with the greatest needs? They refer the people with significant needs to us and expect us to serve them, and we do with good hearts because that is what we are all about. Is that not what we should do, and should the CDDO not stand up for us to have this special funding? I believe so!! It is disturbing to see an organization whose only mission over the past 30 years has been to serve people with significant needs being criticized in such a manner. I cannot accept this, and I cannot help wondering why!

There are really two issues involved here. One is the systemic problem with a broken system. I am glad that Chairperson Mast scheduled this hearing, because the relevant problem is the conflict of interest inherent in the Developmental Disabilities Reform Act which allows the one provider to be both the fund distributor (CDDO) and a competing service provider. If we do an investigation, I believe it will become apparent who is “the politically well connected organization.” The second and vitally important issue at this moment is that CLO does deserve and absolutely needs the Special Tier funding to serve the people with significant and challenging behaviors and medical needs.

You have listened to the facts, and have seen the charts we have shared. I strongly encourage you to continue to investigate the real issues, which are the conflict of interest the CDDOs have when they provide services and why they don’t equally advocate for persons with significant needs.

I know you are people who are willing to learn more and are interested and open to understanding the full story. It is an amazing story of making a meaningful difference in the community, and I love to share the journey that we have been on, serving those very special people who are truly the most vulnerable. I really encourage you to come and visit CLO. We can present and discuss the need for special funding all day long, but a visit with the folks receiving this funding will open your eyes and hearts more than my words ever could do. Please know that I understand you are very busy with many concerns that are important to all the people of Kansas, but since CLO has been criticized in such inflammatory language, I feel compelled to speak on behalf of the people served by CLO. They are the ones at risk here. They are the ones who need the additional funding to adequately meet their needs. It is not about politics and never should be.

Thank you again for taking the time to listen. I would be happy to answer any questions you have for me.