Aaron and Ryan
“My name is Diane and my husband is Pat. Together we have two boys, Aaron (on left) and Ryan (on right). Aaron is 21 and Ryan is 19. Both boys have been diagnosed with cerebral palsy, an intellectual disability and a seizure disorder. Ryan also has PDD (pervasive developmental disorder), a form of autism. In addition, they exhibit severe behaviors, including throwing, hitting, yelling and self‐injury. Neither Aaron or Ryan have ever received funding for support so Pat and I have been the sole care-givers for 21 years. Both boys are on the short‐term waiting list for a Medicaid waiver.”
Diane and Pat
Going to school is the most important part of Aaron and Ryan’s lives. However, Aaron is aging out of high school in May of 2015. Even though it is not known whether Aaron will be allocated a Medicaid waiver, Diane has been visiting day programs and looking for resources in the community so Aaron will have opportunities to stay engaged when he leaves high school. A Medicaid waiver would provide funds to support Aaron in the community in a job, as a volunteer or in a recreational setting or day program.
“I’ve gone to visit some day programs, none of which I have found to be very stimulating. They are not different from being in an institution. They are isolated and there is little peer interaction other than with the staff. I don’t want parents to settle, because I’m not going to settle for a place just because I need Aaron to go somewhere. I just will not do it.“
“It is our quest to come up with something for the boys, for Aaron now and Ryan right behind him three years from now. It’s all about creating a structured routine; that could be through an existing program or through the use of self-directed Medicaid waiver funds. It needs to be a process that is repeatable and sustainable not only while Diane and I are living, but beyond that. That is what we need to strive for so Aaron, Ryan and other adults with disabilities can be active and productive members in the community. The community is only going to prosper if everyone can participate in it.”
“If Aaron does not receive funding with a Medicaid waiver the reality is that he will sit at home and watch TV every single day. I am very concerned that the skills learned and reinforced in school would deteriorate quickly. Social skills will diminish. Without the opportunity to engage in the community, Aaron will become very depressed and reclusive. I believe his behaviors may become so severe that we may not be able to manage them at home.”
Funds from a Medicaid waiver would also pay for in-home support to assist Aaron with personal care tasks and minimize the physical demands on Diane.
"Taking care of the boys on a daily basis is beyond challenging. Emotionally it is very taxing and physically it is exhausting. The exhaustion that comes from taking care of two, full grown men in wheelchairs, is beyond words. We live in a very small bubble because of behaviors, wheelchairs and all the other equipment that goes along with us. We have to calculate every move and can’t live spontaneously. Friends can’t have us over because most houses are not wheelchair accessible. Pat and I are very limited with what we can do. We just try to make it work the best we can with what we have."
Aaron and Ryan require full assistance with their daily routine before and after school. This includes toileting, personal hygiene care, bathing, dressing, administering medication and food preparation.
The evening routine to get Aaron and Ryan ready for bed includes a suppository, toileting and a shower; it takes 45 minutes for each. Since Pat is at work until early evening, Diane must accomplish this alone.
"As a result of a back fusion from T2 to the sacrum, Aaron is not very flexible. This makes it difficult for Aaron and very strenuous for me. When he falls to the floor I have to wait for my husband to get home from work to assist in getting him up."
“Because everything we do is as a family I can’t think of too many families that are closer than ours. The difficult part of caring for Aaron and Ryan is that Diane and I are not able to squeeze any personal or down time to recharge our selves. In the past 22 years, we have only taken two family vacations. Diane is not able to work outside the home. In short, she is trapped and not able to carve out enough time for a career or to earn a wage that would help offset the expenses we have in caring for the boys.”
“Medical bills for doctor’s visits, physical therapy and durable medical equipment are significant. Even supplemental things such as Colace and suppositories add up to several dollars a day. We go to physical therapy at least one time a week and there is probably another doctor’s appointment once a week. Between the two boys, we had 145 medical visits last year.“
“Our priority for the boys is to keep them upright, walking and moving as much as possible. They need to be at least as ambulatory as they are in the home today. We know they won’t be walking in the community independently, but if we have to physically move them without any of their own effort that’s a whole different ballgame. We haven’t even started to go down that path. We physically wouldn’t be able to do it.”
“The most wonderful thing about being a dad to Aaron and Ryan is enjoying the unconditional love and innocence that they give on a daily basis. It is hard to express the emotional bonds I have with my sons. I always want to be with them. Not knowing what the future holds for them is most difficult. I am not able to control what happens to them as adults, particularly after Diane and I pass on. Who will love and take care of my sons after I am gone? I am not able to answer that question. That is the single greatest stress I have each day.”
“I want people to know that without support, if something happens to me or to my husband the boys would instantly be in crisis mode. Because the boys require so much assistance with everything they have to do, we cannot rely on a neighbor to help during an emergency situation. I don’t want to get into a crisis mode in order to get services in place. We need support now before something happens.”
“Our dream is to have Aaron and Ryan continue to be an active part of their community; to learn, to laugh, and to interact with other people that care about them as individuals. We want them to be in a place that can maintain and improve their physical and mental well being. They have so much to give back to the people they interact with and are so appreciative of the people that get to know them. Aaron and Ryan have the ability to be a bright and positive light in the community. They deserve more than just sitting at home with mom and dad. We cannot allow our sons to become part of a growing number of an invisible society because they cannot speak for themselves.”
Pat and Diane