Kansans with developmental disabilities are about to be forced into managed care.
These Kansans rely upon the current DD service system in order to successfully remain in the community. Do you feel comfortable with turning over the care of these 'invisible' Kansans to three out-of-state insurance companies? Please take a few minutes to send messages to the Governor, Lt. Governor, legislators and the media that you want DD long-term care services excluded from the Administration's managed care proposal, otherwise known as "KanCare".
There are two choices for sending messages below. The left button will enable you to send a message to the Administration, your legislators and the media urging for DD long-term care services to be excluded from "KanCare". The right button will enable you to send a message to your legislators urging them to sign a legislative resolution that calls for the Administration to delay implementation of "KanCare". Please take time to send messages using both options below!
Add your support. Help them be heard.
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This effort is funded by InterHab and concerned Kansans
Kansans' Lives in Limbo Due to Waiting Lists
- Joann's Story
Joann is a 57-year-old woman with moderate Mental Retardation, who is patiently waiting for additional services and supports. Her's is truly a story of sadness ... READ MORE > - Jayne's Story
Jayne is nearly 30 years old and has Rett Syndrome, a neurological disorder seen mostly in females ... READ MORE > - Chelsea's Story
Two-year-old Chelsea was born with Down syndrome. She needed therapy to learn to walk and talk ... READ MORE > - Mason's Story
Mason is 19 years old and has Autism. He receives no paid services, but has been on a waiting list since 2005 ... READ MORE > - Micah's Story
Two-year-old Micah has autism. Micah's mother, who works with special needs children, realized when Micah was 8 months old that he wasn't developing typical language skills ... READ MORE >
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Invisible Woman: Joann's Story
Joann is a 57-year-old woman with moderate Mental Retardation, who is patiently waiting for additional services and supports. Her's is truly a story of sadness.
The oldest of seven children, her parents were unable to care for her as a child, and her grandparents raised her in a small Kansas town in a very small old house that had no indoor bathroom. Her grandparents did not allow her to have friends or have a social life outside of the grocery store and church. Joann attended school through the eighth grade and is not sure why she left school. After that, she says, "I stayed home and helped my grandma."
After her grandparents passed away in the 1980s, Joann stayed home by herself. Her father would come by to cash her assistance checks, help her groceries, then keep the rest. When he passed away Joann was on her own, with some help from caring neighbors. "They (her family) never came and helped me," recalls Joann. By 1999, her home was falling apart, her basement flooded and her toilet stopped working. Gradually, she began receiving community services. A more suitable home was located for her where she could live independently. Staff assisted her with her medical care needs, she received life skills training and staff worked with her on her personal hygiene, cooking, cleaning, and household chores. Initially, Joann was frightened and hesitant to attend day services and interact with others, but now she loves it!
As she gets older, it is becoming more and more difficult for her to live by herself without more assistance. She dreams of moving to a group home, where she can be with friends and get the daily assistance she needs. "I do my housework and fill my bird feeder. Then I lay down and rest," Joann says. She leaves her bed to eat and use the restroom, to go to church on Sundays and the days she attends day services. She leaves her apartment only when she is assisted by her care provider.
Joann's health is slowly deteriorating. She would like to have the opportunities for more socialization and activities in the community and increased assistance with accessing medical care. She worries about her future as she grows older and her needs increase.
Jayne's Story
Jayne is nearly 30 years old and has Rett Syndrome, a neurological disorder seen mostly in females. Jayne needs assistance with feeding, bathing, dressing, and toileting. She has never walked or spoken a word. She suffers from seizures, and a feeding tube serves as her nutritional lifeline.
Yet Jayne faces each day with bright eyes and a great smile. She loves to go out and about, as she did on a recent visit to the Louisburg Cider Mill with friends from her day service program. Jayne graduated from special education in the Shawnee Mission School District in May of 2000. It was December 2001 before she was able to receive day services.
Wthout day services, Jayne's life would be quite different. There would be no outings in the community with friends and people outside her family. She would spend most of her time "vegetating," deprived of the opportunity to enjoy life and bring joy to others.
Unfortunately, many Kansans are still waiting for the services that would help them stop vegetating and get more out of life.
Chelsea's Story
Two-year-old Chelsea was born with Down syndrome. She needed therapy to learn to walk and talk. As the months progressed, Chelsea did too! She was able to move from a standing position to sitting by bending her knees.
But after about a year Chelsea's parents received terrifying news: their daughter was suffering from leukemia. Eight months of brutal chemotherapy followed.
Now in remission, Chelsea is again receiving the therapies she needs. She is learning to say "Mama," imitating more and continuing to improve her sign language skills.
Thanks to the services Chelsea has received, her mom can allow herself to think that the future holds even greater promise and hope. Her little girl is smiling, full of energy and attuned to the world around her.
But unfortunately, too many Kansas children with special needs continue to wait - and wait - for the services they so desperately need.
Mason's Story
Mason is 19 years old and has Autism. He receives no paid services, but has been on a waiting list since 2005.
Mason requires consistent, structured support to facilitate learning and avoid aggressive behaviors. His behaviors recently have become more aggressive, despite his family's best efforts. He is destroying property, hitting family members and placing himself in dangerous situations. He responds to only his mother, often waiting for her before he will get off the school bus or to eat a meal. She frequently needs to close up their family business early so she can be at home to attend to her son.
Mason's mother is afraid of what will happen to him and the rest of the family if they cannot obtain help. How many more years will they be forced to wait?
Micah's Story
Two-year-old Micah has autism. Micah's mother, who works with special needs children, realized when Micah was 8 months old that he wasn't developing typical language skills. He seemed obsessed with watching wheels turn around and around.
She immediately attempted to have Micah evaluated. It took persistence and determination because along the way, she was told, "there is no benefit to early diagnosis of autism."
Micah was eventually seen by a developmental pediatrician. He was diagnosed with mild autism and referred for therapies he needed to develop language skills and deal with the sensory issues that can make it hard for autistic children to wear socks, have their hair combed or eat a nutritious diet.
Early diagnosis — and early intervention — are crucial for children like Micah to enjoy life and reach their full potential.
"If a parent has a feeling that something isn't right — their child isn't interacting — it's critical to get help," Micah's mother said.
Unfortunately, too many Kansas children who need the services that helped Micah are stuck on a waiting list. And as they wait, precious time is being lost.