Like We Won the Lottery

“It breaks my heart to think there will be no place for him if Medicaid for the disabled population is discontinued!” - Diane Sapko, Gregory’s mom

Gregory's Medicaid Story

As told by his mom, Diane

"Thirty-one years ago my son was born and we were expecting a healthy baby boy. By all accounts he was!! However, about 10 months later his development wasn't normal. Saw a neurologist and that's when our world fell apart, atrophy of the cerebellum was just the start. No specific diagnosis just lots of pieces that have never fit in a single diagnosis. So heartbreaking to watch and wait to see what your child can do and not do. Through those early years we learned Greg had cognitive impairment, speech delays, optic nerve atrophy and couldn't walk independently. We absolutely adore this young man but there are so manychallenges on a daily basis and we are overwhelmed with how to prepare for his future when mom and dad are either too old to care for him or no longer on this earth. He is a guy who loves being around other people even though he can't communicate very well and he loves to laugh and be silly with people. Those with a sense of humor get the most laughter out of him!!"

Why Medicaid Is Important to Gregory:

"Greg, fortunately, was selected off of the PUNS list in 2009 and I actually cried when we received that letter. It made us feel like we won the lottery for disabled people!! It breaks my heart that parents are on the waiting list and do not have access to the services that would enhance their lives like it has done for us. Because of his selection, Greg became part of a Medicaid waiver program that provided funds for us to hire a respite helper in the home and to have access to equipment and communication devices. He also had access to therapies through his educational years which was huge!! Caring for a disabled child is a 24 hour job!!! Help and support makes the journey just a little bit easier and Medicaid provides that for us.

Once Greg graduated from his high school transition program, I knew that because of Medicaid, we would be able to enroll Greg in an adult day program which otherwise would have been out of reach since we would have had to private pay. What a daunting thought that was. That's extremely expensive incase you didn't know!! These programs get approximately 85% of their funding from Medicaid. It is imperative that these programs continue, they are a lifeline for the disabled community. When covid shut everything down and Greg couldn't attend his day program, I realized how EXTREMELY important these day programs are for the child and the parents. The lack of social stimulation was devasting for Greg. He wasn't like a normal kid that watched TV programs, read, played computer games, etc. His life was the excitement of the bus picking him up, having lunch with his friends at the day program and his bus ride home.

Also, the special people who work at these programs are priceless and I am thankful everyday that they choose to do there job. In our world of disabilities, they are the angels of these programs (they definitely need a pay raise!) Without Medicaid, our world would come crashing down as we know it. At the age of 31, we have the thought of residential hanging out there. Without Medicaid, that would be an impossible goal to achieve. What happens when mom and dad are no longer here??? Aunts and Uncles are as old as mom and dad and won't be able to care for my son. It's break my heart to think there will be no place for him if Medicaid for the disabled population is discontinued!! It just can't happen."

What Does His Mom About Medicaid Cuts?

"For us personally, Medicaid cuts to disabled individuals will destroy the life we have created. Greg would have access to none of the activities and social life he currently has through Ray Graham Association. His quality of like would go from a 10 to zero. Adult Day Programs are the world that people like my son are accepted and comfortable in. They are treated like regular people and treated with respect.

There is no other place that Greg would feel this comfortable. Medicaid cuts cannot happen to this population! I pray to God these politicians understand this! They absolutely need to walk in our shoes for at least one day! I would welcome anyone of them to spend a day at my house from am to pm so they can see the reality!!"