MARK'S STORY

(Reprinted with permission from 2/3/09 letter sent to Senator John Vratil from Donna and Richard Emerson)

February 3, 2009

To Mr. John Vratil
Kansas State Capitol – office 281-E 300
S.W. 10th Street
Topeka KS 66612

Dear Mr. Vratil, My name is Donna Emerson. My husband Richard and I have lived in Stillwelll, KS for almost 25 years. I am 65 this year, and he will be 69 next month.

For the last 12 years, up until October 2008, 4 months ago – I had taken care of a family member with severe autism (my great nephew, Mark Kays, who will be 20 years old on September 4th, 2009). He is non-verbal for the most part, and very hard to understand when he does try to speak. He has mental retardation and seizures, which we try to control with medication: Depakote for the seizures and Risperdal for his autism.

He is 6”4” and around 200lbs. Mark can be very physically aggressive and destructive to his surroundings. With all this said, he can sometimes be very sweet tempered. We’ve been in his life a long time and like him like he is our own son. We got guardianship on Mark when he turned 18.

Mark is the son of my niece who has been unable to care for him, and may never be able to care for him due to very serious personal issues. There has been no one else in the family, who can help me with Mark, because he is so hard to handle, and no one can deal with him.

I also take care of my mother –in-law, who will be 95 in November 2009 (she’s been living with us many years) and I’ve taken care of my sister (she’s 60) for the last 20 years. She has paranoid schizophrenia, diabetes, COPD, emphysema, high blood pressure, and cancer (She’s Mark’s only living Grandmother). I took care of my mother for her last thirteen years before she passed away in 2003 with congestive heart failure and Alzheimer’s. I had very little help.

I knew that I could not keep up this pace, but I kept trying because they are family. We started looking for services and programs in 2004 for Mark. In early 2005, I put Mark on a waiting list to get help; either respite or residential (any kind of assistance), I was provided a list by the CDDO of organizations I could choose from to sign Mark up with. That could in the future provide me with help and services for Mark. There was, however, a waiting time period of at least four years for any services.

I chose CLO, Community Living Opportunities, residential because I thought they would be extremely family friendly with their set up of a family always living there with Mark in the same environment (and also they would be there in residence with him, teaching and caring for him). He would always have a family around him not just caretakers coming and going in a building where he was residing.

On October 5, 2008 I had a heart attack and ended up in St. Lukes Hospital in Overland Park, KS and couldn’t take care of Mark any longer. My husband called Traci, our wonderful CLO case manager for Mark. She was able to find a CLO residential home for Mark on short notice and helped us under a crisis situation in our extreme time of need. We are so grateful for CLO’s help and assistance. CLO and his new family now help Mark not with his residential but also assist him with learning new skills and helping him in keeping old skills previously learned, working with his aggressive behavior issues, assisting him with taking his medications, and many other things.

They are the ones now who deal with his school and school issues (he will continue to go to school until he is 21 years old), his job training, and community recreation activities, etc. They take him to their wellness clinic for appointments with the Doctors and Nurses for any of his health issues. They are involved with him intensively with every aspect of his life. Mark is a one on one type of kid, 24 hours a day. When he lived with us, you had to watch him every second. He doesn’t know what is safe or unsafe. He can still put strange things in his mouth. When you are outside with him, you have to stay real close to him, you have to stay real close beside him – not knowing where he is going to run off to and not watching traffic. He can be very aggressive and out of control when he wants to do something or go somewhere that he desires.

I am so grateful to CLO for their help and commitment to Mark. For all their effort and I know “expense”. I don’t know what I would have done without them. Mark probably would have had to go to an Institution somewhere. He’s big, strong and aggressive and I don’t know I couldn’t have handled him much longer. It’s hard to reason with him and explain things to him and get him to understand you. I would try to take him to the store with me and go shopping for groceries and then to the check-out to pay for our items, but he has very little understanding of money – the concept of how much a nickel or dime is worth, or a dollar.

I have just heard – and I’m sorry to hear this – that an effort is currently being made by some individuals in a group called “InterHab” (who have members in CDDO – “Community Developmental Disabilities Organization”, which is a division of “Johnson County Developmental Support”, JCDS) to stop providing – and reverse- special tier rates funding provided from SRS (Social and Rehabilitation Services) which covers a lot of unfunded needs that most developmental disability service providers don’t deal with I think this additional Tier Funding is urgently needed by CLO (the agency Mark is with) – “Community Living Opportunities”, to cover the needs of people like Mark who have severe mental and physical challenges and expenses.

Mark takes the BASIS assessment test every year at CLO to determine how great his need is for help, and it was great due to his disability issues. BASIS is the Statewide Needs Assessment tool. If the scores are high, then there are greater needs. CLO’s average in 2008 was 185. When the Winfield State Hospital was closed, the average score of the individuals there was around 156. There is a disproportionate number of people with severe, multiple disabilities that CLO serves, where the State’s reimbursement system doesn’t cover the cost of their needs. People like Mark who do have more significant needs, have higher expenses for health services (Mark had lots of trips to the Doctor’s office), property damage, more expenses for professional services. There are other clients of CLO who, I am sure, also have had a lot of expenses – maybe even more so, for adaptive equipment, health supplies, and even non-billable days related to hospital stays. My husband and I were hanging on money-wise to try and cover Mark’s additional expenses ourselves. We are on a fixed income. Mark was very rough with furniture sometimes and other household things; we were repairing things constantly, which go broken. We incurred higher expenses with his developmental disability challenges.

I don’t think CLO receives any of the discretionary State aid and County Mill Levy funds that all the other 28 CDDO’s receive not do the CDDO’s share these funds with our CLO (who is an affiliate of CDDO) to help them. Even the Johnson County Developmental Supports Agency (JCDS) who receives around $9 million in State and County discretionary funds, doesn’t share their funds.

Because CLO mainly serves people like Mark, who have severe and multiple disabilities, I believe CLO does qualify for the 43 New Special Tier Funding rates proved by SRS. The Special Tier Funding was originally developed to help support people with greater needs to move out of Institutions. After SRS reviewed individuals at CLO for qualification for Special Tiers, they did approve 43 who demonstrated considerable need.

CLO has been working with SRS over the last 2 years to be able to receive this funding to cover a lot of unfunded needs that most developmental disability service providers don’t deal with – this is just not some new special deal as “InterHab” states. CLO has been working with SRS on this for some time now to help protect the funding for people like Mark who have profound mental, physical, medical and behavioral challenges – some very severe. These are needs that will go on for these people for the rest of their lives!

I think this increased revenue of these 43 Special Tier Funding Rates has finally brought CLO (Community Living Opportunities) to the “Statewide average” for increase in funding – which is now “fair” and as it should be. (There had been a significant difference between the cumulative percentage rate increase CLO received since 2004, compared to the Statewide percentage increase provided by the Legislature.) CLO had been incurring losses since 2004.

Please don’t reverse the recent SRS decision to provide CLO with the 43 new Special Tier Rates that help our most profoundly disabled citizens. Thank you for taking the time to read my letter with my serious concerns.

Respectfully,
Donna and Richard Emerson