“Coming from a Military family gave me many opportunities to travel, meet people from all walks of life, and learn different languages and cultures. There were few obstacles or limitations I could not overcome with hard work and determination….until I had my son. He became disabled at the young age of one-and-a-half years old.
….With disability comes obstacles and limitations
….With disability comes stress, frustration and intense sadness
…With disability comes a love like I have never known. An unconditional love and a determination to give my son every opportunity (to the extent possible) to participate in life like everyone else.
…With disability comes courage and bravery and persistence to keep fighting a fight that often feels insurmountable and overwhelming. Sometimes, it’s the disability that makes me feel this way, but mostly, it’s the broken system.
Sadly, it takes a village. Hopefully, there is a village. The disabled population need help. It’s not their fault.
My son is 30 years old. He is physically and intellectually challenged. He has a bone condition which causes fragile bones. If he falls, his bones can easily break. He has difficulty chewing and swallowing and needs constant supervision when eating. He needs his food specially prepared so that it is not too dry or the pieces of food too large…lest he choke. He also chokes on his own saliva – especially at night when he is sleeping.
My son has seizures. He must be on a walking schedule so that his bones stay strong. He cannot walk on his own and needs physical assistance. If he doesn’t walk, he gets terrible leg cramps. He must wear diapers and needs to be changed frequently so he doesn’t get skin breakdown. He is 5 feet and 10 inches tall and weighs 160 lbs. When he was little, it was easy. Now, it is not. Everything has gotten harder as he has grown older. But, intellectually he is a baby in an adult’s body. This is the reality. This is it. It is what it is.
I am a single parent and I need to work. I need help. I have to pay my bills like everyone else. And, I need to take care of my son. My son needs complete care for all of his needs – dressing, feeding, showering and walking. If someone doesn’t change him, he doesn’t get changed; if someone doesn’t feed him, he doesn’t get fed. He can’t do it for himself. I rely on home health aides. If someone doesn’t walk in the door, I can’t walk out the door.
I am training again. A new home health aide. The last one moved. And the one before that got a better paying job with benefits and vacation time. And the one before that got a better paying job. They love their work and they love taking care of people, but they can’t afford the pay, which is at poverty level. These last few years, the turnover has been very high. It’s now 40 – 60 percent and 80 – 90 percent leave within the first year. Because of the seriousness of my son’s conditions, home health aides must be well trained. It takes about three weeks to a month for training.
I also work in home health. I visit a client and then go home to walk my child and train my aide on how to walk him. I visit another client and again I race home – this time to help change my son’s diapers, because it takes time for most aides to learn how to do this. Transferring him from his wheelchair into the house and into his regular chair is entirely another process. The risks are too great to leave him alone with someone who does not know or understand his conditions. It takes time and it takes practice. Each time I lose an aide, I have to interview, teach, train and practice. And pray to God that they stay. I lose time, I lose patience and I lose money.
There seems to be no end in sight. I am tired. I am burnt out. I need a break. My aides used to stay for seven or eight years – back when the pay was ok. But now, no. There has been no pay increase in years. No cost of living adjustment. There are a lot of hurting people out there, including the caregivers. Money is being disbursed everywhere in this economy, everywhere except to the disabled and the home health aides. The disabled population can not do it themselves. They need help. It takes a village. ” – K.B.
“I am the single parent of a 22 year-old young man on the Medicaid waiver. My son has autism and emotional disabilities. His participation on the Medicaid waiver program ensures that he is afforded his right to participate in society without barriers, live in his least restrictive environment, and receive services in his community to avoid institutionalization. In order to take advantage of the Waiver, he relies on direct support professionals.
As a parent of an individual with a disability, my goal is not much different than yours – I want to raise my son to be a person who can function to the best of his ability in society, be productive, contribute, form meaningful relationships, and remain safe and healthy. In order to accomplish this, he needs help. He is in danger of being isolated because he is not able to participate in society without the assistance of other people. Through the Medicaid waiver, he is afforded the assistance of support professionals. These are not just people who “babysit” him. Beyond just supervision for safety purposes, these are people who are instrumental in the achievement of my son’s goals as a person with a disability.
I work full time and attend graduate school full time. Because of this, I am only able to offer a limited amount of support to my son. In order to ensure his health, safety, community inclusion, and participation in activities to achieve goals, I rely 100% on his support professionals. Without them, he would be unable to go out of his home to work on his goals, socialize, participate in the community, stay clean and healthy, and remain safe. These are not small things. His life quite literally depends upon having his support professionals. As a parent, I have no idea what I would do if I didn’t have these supports for him. I definitely would not be able to work. I would not be able to continue my own education to better our lives. What would happen to us? That’s how important our support professionals are.
If I am not available, my son depends on his support worker to cook for him, cut up his food and supervise him eating, bathing and washing his hair, and a whole host of personal care that my son is not able to do independently. Again, this is not a small thing. My son is not able to maintain a healthy and safe life without the assistance of direct support professionals. When they are underpaid, not only it is an insult to them, but it literally puts my son’s life in jeopardy. We all know that when someone is paid properly, they feel valued. When they feel valued, they perform better. With the extremely low wages currently in place, the agencies that hire these workers are in crisis, and the workers themselves can obtain much easier jobs for the same or better pay. The work of direct support professionals is extremely important, and as such, these workers should be compensated accordingly. We can’t expect someone to care enough about our kids’ lives if they are being paid wages that communicate that their work is not important.” – C.B.