When Michael Bird goes to his parents’ home for a visit, he walks around the rooms checking everything out. Before long, he walks to the front door and stands there or takes his mother’s hand and walks her to the door.
That means Michael is ready to return to his own home, which is a Creative Community Living duplex in Winfield.
“Michael loves his home,” said his mother, Sharon Bird. “He has his own bedroom. He likes to go there and lie down. He can have his music on, which he prefers over television. When he needs to rest, he can. When another individual is having a bad day and he wants to get away from the noise, he can go to his own room.
“The kitchen is the second-most-loved room in the house for him,” she said. He hangs out there with the staff. He spins his Frisbees on the floor and watches the staff cook. They always have drinks set out for him so he can help himself when he’s thirsty.
“I know by the way he acts there are certain staff he really likes. He will walk up to them, and that usually means he wants a hug. He gives them eye contact if they are a favored person.”
It has been an enormous relief to Sharon and her husband, Dr. Alvin Bird, that Michael is so content since moving to his present home in December 1997. When the Kansas Legislature was considering closing an institution for people with developmental disabilities in the mid-1990s, Sharon was president of a Winfield State Hospital parents group that had been meeting for 10 years. She and the group did everything they could to keep the hospital open because they were convinced their children wouldn’t receive the same level of support in the community.
Michael, who is now 44, had lived at home with his family for almost 10 years, then lived at Parsons State Hospital for about seven years. After the Birds moved to Winfield in 1982, they had Michael relocate to Winfield State Hospital.
“Michael was really happy at the hospital, and I thought he got good care,” Sharon said. “When they started talking about closing the hospital, I looked around the state of Kansas and thought ‘Where is he going to go?’ They didn’t have programs set up in the community for severely handicapped people. There were mainly group homes where the individuals had to go to sheltered workshops at least five hours a day, five days a week.
“I knew Michael could not stand being there five hours a day. Physically, he could not stand that much activity. He wouldn’t understand what he was supposed to do. He would not be able to produce a product. He didn’t understand money so wouldn’t have been motivated to work. He wouldn’t have the skills so he would have been sitting there, sleeping, spinning objects or getting up and being disruptive.
“I just knew he would be very unhappy, so I worried about his health,” she said. “Would he still be healthy in six months? I didn’t think he would be.”
When legislators voted in 1996 to close Winfield State Hospital, the parent group decided to create an organization that would focus on the needs of their children instead of forcing them into a different lifestyle.
“The state promised we could choose where our children went,” Sharon said. “We agreed we would put the group we were organizing as our first choice. Other people said it would never work out. I did a lot of praying at that time. It seemed like every time a door closed, another door opened, so I felt like God was telling me it was not only what I wanted but what he wanted as well. We were extremely fortunate that many of the staff at the state hospital were willing to take a chance and come to work for us. With their knowledge and skills – and the help of a lot of other people – we were able to pull it off.”
One hundred and one of the hospital residents selected CCL as their community provider. Fourteen duplexes or houses were opened by CCL in a variety of neighborhoods in El Dorado, Winfield and Arkansas City, beginning in December 1996 and concluding in January 1998. CCL’s main offices are in Winfield, but there is a smaller office in El Dorado. Day centers are located in both office buildings.
Sharon was among the parents and guardians who helped in thousands of ways to get the Creative Community Living nonprofit organization up and running. She has served as president of the board of directors since the beginning.
Does she recall being worried about Michael adjusting to living in a community setting?
“No,” she said. “I knew the administrative staff and knew they would do the best job they could to train the staff at Michael’s home. I also knew that we had staff members who dropped in at the houses to check on the care the individuals were receiving. Also, except at night, we had two staff on duty – one staff for two individuals, which was better than at the state hospital. That made me feel secure. If something were going wrong, there would be someone else to report it. I don’t know how you could do better than that.
“Michael was happy from the minute he walked in the house and was given a bedroom,” Sharon said. “He loves to go in the van or car. He loves to be in his back yard. He just loves to be outdoors. He has been to the state fair and to Wranglers baseball games on a number of occasions. When the crowd claps and yells, he does the same thing. He’s gone swimming, he goes to church services, and he takes part in the monthly birthday parties in our day services area. He goes out as often as he is healthy enough to go. If he’s having seizures or other health problems, the other guys go, and he stays behind.
“That’s what is most important to me – he has the ability to have a lifestyle that he needs in a setting that CCL provides. He doesn’t have to go to any activity when he can’t make it, just because the rest of the house is going. Before CCL, there really wasn’t much available in Kansas for individuals with severe disabilities.
CCL’s nursing services are something else that gives Sharon peace of mind, she said.
“Michael is seen every day by a nurse who comes to his home,” she said. “If there is anything she can’t handle, she calls our RN. She can call a doctor if needed. Ethel and Alvin – Ethel Gates is CCL’s director of nursing, and Alvin Bird is the primary care physician for many of the clients – often make rounds in the homes for the convenience of the individuals. If someone is sick, they will be taken to the doctor’s clinic. If they are very sick, they are admitted to our local hospital. The hospital staff is used to seeing individuals with special needs, and they do a great job of taking care of our children.”
Michael’s main health problems are very severe seizures and difficulties with his esophagus. He is now on a liquid diet.
“He’s happy to not eat solid foods,” Sharon said. “The food must have gotten stuck and caused great pain. Now that he doesn’t have that, he is a happy person and has gained weight.”
When Winfield State Hospital closed, parents were guaranteed that the care their children received in the community would be as good as or better than the care they received at the hospital. One concern of Sharon’s is that with the many budget cuts made by the Kansas Legislature, that promise is crumbling.
“At what point will the staffing ratio be changed due to the funding, which affects the quality of care?” she asked. “There is only so much you can cut. It changes how services are provided. When you can’t provide good staffing or have too few staff on duty, it affects the care of those who must be toileted, clothed and fed. When the individuals are dependent on others, they have to wait for somebody else to do it. If you don’t have enough staff, they can wait a long time. It is a concern.
“CCL can’t pay the staff as much as state hospitals do – or give the benefits. It isn’t even close,” she said. “How can you expect people to work without giving them decent pay? They have families, too. That affects the staff turnover, which affects the lives of the individuals. The individuals get used to having somebody around and really like them. Then they are gone. They don’t understand why they don’t show up. I don’t know if it’s a scary feeling or a feeling of loss. Even though Michael can’t say anything, I know he feels that loss.”
Judging by comments Sharon has heard from other parents, they are also satisfied with the lives their children have in the community and want it to continue. Originally, all but one individual served by CCL had resided at the Winfield State Hospital. Later, CCL began providing services for individuals with fewer disabilities who come from home or other agencies. Currently, about one-third of the individuals served by CCL did not reside at a state hospital.
“I’ve heard others say this is the happiest their child has ever been,” Sharon said. “I would have to agree. Since moving to his CCL home 13 years ago, Michael is very happy and content. If he or I were to die, I would feel that we had done the best job we could for Michael.”