Kiara is 9 years old. She was born in the Bronx and lives with her mother and father. Kiara was born with diplegic infantile cerebral palsy, restricting her to the use of a wheelchair. She requires full time care. If you met her you would see that even through her pain, she prefers to smile.
Her mother and father struggle with the daily choice of splitting time so that one of them can be at home to help care for their daughter versus seeking additional hours at work due to the bills that far outweigh what they earn each week. The days are not easy and the stress builds by having to cope with these decisions day in and day out.
What we think of as simple tasks can be a major undertaking for Kiara and her parents. Just getting up and ready for the school bus presents challenges. Having to negotiate elevators in their building that constantly break down, subway stations that are not handicap accessible causing them to make long trips even longer, provide uncertainty and frustration at every turn.
Making matters worse is that Kiara, at age 9, was still in the same wheelchair designed for her when she was just 2 years old. Kiara grew, and outgrew her wheelchair. And Kiara, along with her parents, suffered. Her primary care physician failed to provide them with any assistance in recommending more appropriate care with an orthopedist or other doctor. Nor did he volunteer information so that the parents were not aware that Medicaid would cover the cost of a new wheelchair.
Repeated absences from school and other issues the parents were dealing with would raise flags and soon Kiara’s parents were being questioned about the care of their daughter.
Unfortunately the reality was that they were falling further and further behind because of her needs. Kiara’s parents were experiencing the dreadful thought that they may end up losing their daughter, despite their hard work and love for her.
The Preventive Services team at Cardinal McCloskey, supported by your donations, serves families facing challenges that would test the parental capacities of many of us. Our Special Medical and Developmental Preventive Services, Family Treatment and Rehabilitation and our Family Connections programs are all built on services and goals to keep families together and help them cope with difficult family situations and acquire the necessary skills that will allow them to be self-sufficient.
In 2012, Kiara and her parents were referred to Cardinal McCloskey Community Services, specifically those in our Preventive Services group.
They were assigned a case planner who worked with the family to understand their background and difficulties they were having. Kiara’s family wasn’t familiar with the services available to them and they had extreme difficulty trying to navigate their way when they inquired about them. Our case planners work with families each and every day so they not only know what services are available (like transportation) but how they can go about utilizing these services.
Kiara’s mother was also introduced to the CMCS Parent to Parent program. This program puts people in direct touch with other families who have been in similar situations and they act as a support structure as families come to know that they are not out there alone and on their own. Having someone to reach out to when you feel the stress of raising and caring for a disabled child is invaluable. It gives families hope, guidance and confidence that they can continue.
The Preventive team worked with the parents and helped educate them about the services available to Kiara, like access-a-ride, which would ease her travels to and from school.
The days have improved for Kiara and her family. They obviously are still faced with challenges but with your support of programs like these, children like Kiara can remain at home with her parents.
Lastly, with the assistance of her Family Support Specialist at CMCS, Kiara did receive a new wheelchair and she is mobile and independent as never before.
Kiara’s story is just one example of the thousands of children and families you have helped through your support of CMCS.
(The names in this story were changed to help protect the privacy of the family.)