By Rebecca Feldhaus
http://stream.publicbroadcasting.net/production/mp3/wkms/local-wkms-914537.mp3
Murray, KY – A career change can be stressful on many levels. For Pam Rockwell, however, it was just taking it to a personal level. A few months ago, Rockwell became a full time Life Skills Coach for 14-year-old daughter, Hannah. She has Down's Syndrome, which makes many daily activities a challenge. What makes their quest so unique is that Hannah plans on attending college in five years and if her father, Squire's hopes come true, she'll strive for something more.
"Her mother and I aspire to have her reach as high as she can reach and to be as ordinary and normal as she can be. Not only go to college but get married and have a family, drive a car. There are people with Down's Syndrome who get to that level. They are few, but we will do all we can to get her there."
Pam is a licensed clinical counselor and used to work at Four Rivers Behavioral Health. With help from her old employer, she submitted a care plan for Hannah and got state approval and funding. The particular plan is special. Rockwell explains.
"It gives people like Hannah the freedom to specify what they want to achieve, and how they want to go about achieving it and it allows the people that are the closest to them, and the ones who are most invested in the outcome, which is usually their family - it allows them to direct what is going on with their child."
The consumer-directed program through Medicaid essentially allows individuals like Hannah to hire, manage and dismiss care-givers in this case, her mom, at her own discretion. However, since Hannah isn't 18 years old her mother was able to select herself. And Hannah seems content with the choice.
"Do you like having your Mom as your coach .."sometimes"
Don't let the typical teenager response fool you, the "sometimes" was accompanied by a big smile.
Pam's plan for Hannah was the first consumer-directed plan in Kentucky to be fully funded after its first state review. She says Hannah's determination had a lot to do with it.
"They recognized in our goals and objectives and also because they had interviewed Hannah and saw how far she has come at this point in her life. They recognized that our long term goal, being for Hannah to go to college, was something that was really worth supporting in every way that they could."
Pam meets with a case worker every month and they keep track of the work she does with her daughter. She says she takes copious notes on everything she does with Hannah.
Hannah has six specific goals with smaller objectives including learning independent skills like dressing herself appropriately; learning to order and pay for meals at a restaurant; and being a self advocate. Hannah has given presentations at many schools to help others understand her disability and to help her further understand herself. Though the plan is very strict, Pam says she and Hannah, in some ways, have an average mother-teenager relationship.
"Life isn't much different for Hannah except that I'm available to her more. I've always been Hannah's coach. She always has me on top of her."
"And I want her off of me!"
The state pays designated workers like Pam on an hourly basis. Since she's Hannah's mother, she says many days she only bills for about three hours. It's not easy to make a living from these wages. Pam explains why she chose to make Hannah her career.
"Because this is what I've always done for Hannah and know needs to be done for Hannah anyway, and this allows me, by formalizing my activities with Hannah, it allows me the freedom of time and the financial freedom to do this for Hannah."
The freedom has given Pam and Hannah more time to move forward with her goals, including college visits. So far, the program they've liked best is one at College of Charleston in South Carolina. But 14 year old Hannah has brought much to her middle school experience as well.
"I usually come out of my personal shell."
She has brought peer mentoring and community based instruction to the classroom. She also is a member of the Murray Middle School cheerleading squad. These things along with mother doubling as life skills coach all contribute, Hannah says, to her personality.