#EveryoneDeservesCare: BC's story

September 21, 2022 / #EveryoneDeservesCare

When BC’s son, CC (now 34 years old), was diagnosed with a Pervasive Developmental Disability (now known as autism spectrum disorder), she was not new to the disability world. As a special education teacher, she had experience in teaching children with disabilities. BC quickly learned that having a child with a disability is an extremely unique experience.

Being able to live independently in the community has always been a goal for CC and his family. “My goal was for him to live independently, be employed, and have community connections,” BC reflects, “And that has not worked out very well. It’s been a very long road.”

CC is a social and friendly person. In high school he made a great group of friends who made him a part of their community. When asked, CC explained that he likes being an adult and living on his own. “I like having my own place, having spare time and alone time… I like to work out, run, exercise, and be with friends.”

One of the main factors that has made CC’s road to independence difficult is the shortage of direct care workers – people who can provide the support CC needs. Since CC started living independently, 11 years ago, their family has gone through at least 6 different providers. BC has spent hours combing through agencies and organizations to try and find providers. Papers and folders were cluttering their home as the search weighed heavily on her. Eventually the stress of combing through providers wore BC down, and she agreed to give the responsibility over to CC’s Service and Support Administrator, or SSA. She hoped that doing so would make the process smoother for CC while causing her less stress.

BC recalled a time her family was having a particularly good experience with a provider agency. Her son had indicated that he did not like one of the agency’s providers, but BC believed this was because the provider simply played on their cell phone most of the time. However, BC and her husband were crushed when they accidentally caught the provider verbally abusing CC on a front door camera. Unsure of what to do, but not wanting to lose CC’s other provider and their relationship with the agency, BC called their local county board of developmental disabilities. She was not aware that the board employee was a mandatory reporter, and their family was subsequently dropped from the agency. “I’ve been trying to fight the good fight,” BC states, “but there is always something. It’s the upkeep.”

Having providers who can help CC live independently is important both for BC and CC. “We might need a break from him, but also, he needs a break from us.” CC enjoys having alone time, and being able to do chores on his own. BC recalled the time when CC started mowing the lawn on his own. “He was so proud that he was able to do that independently.”

The stress of caring for CC falls on more than BC and her husband. Her other sons also feel the weight of CC’s care. Like many parents of adults with disabilities, BC worries about what will happen as she continues to age. “We want to know that he will have a good place before we can’t take care of him. I don’t want it to get to that point.” As CC ages, his parents have had more difficulty managing his behaviors. He has had several negative encounters with law enforcement officers, during one of which he was pepper sprayed by an officer. He has battled several addictions. CC used to get a weekly allowance, which gave him more freedom, but as his behaviors increased, his family was forced to pull back some of his resources. “We want him to have independence and trust him… we want him in a community where he can walk to get coffee, to see his friends, or go to the gas station.”

When asked how a lack of care for CC has impacted their lives, BC responded that it impacts everything. “We don’t have as much freedom as we would like as we age.” Despite their lack of care, BC still considers herself lucky. She has a great group of friends she can rely on and believes that regular exercise is crucial. But more providers and more care will become more and more critical for CC and his family as his parents continue to age.

When asked what changes need to be made to improve the direct care system, BC was quick to share ideas. She hopes for increased wages for providers, and a more robust education and training program for them. In particular, she believes providers need more preparation in dealing with challenging behaviors. BC also wants to see an increase in some county housing programs. “If they don’t have statistics about how many families are like us, how do they know how much money and resources to use?” She is a firm believer in change from the ground up. “Give money to the local levels, because they know their community better. They know what their community needs.”

Finally, BC wants to see a change in the waiver process. When CC was younger, he was kicked out of a group home. During that time, he was technically considered homeless, and therefore, qualified for the Individual Options (IO) waiver. The IO waiver has been indispensable for CC, but he shouldn’t have needed such extreme circumstances to get it, which is a product of a service system where demand far exceeds the level of services available and therefore has waiting lists.

BC doesn’t just talk about the changes she wants to see in the direct care system, she advocates for it. She has made numerous phone calls to her state representative and congresswoman, and attended yearly conferences to learn more about CC’s options. At the end of the day, she simply wants her voice to be heard. “If I have questions I go to parents in the same situation. They have the best suggestions, because we’re all in it together.”

#EveryoneDeservesCare shares real stories from disabled Ohioans that have been affected by the Direct Care Workforce Crisis in order to educate the population and those in power to make change on the dire nature of this issue. Direct Care Workers are people who provide home care services, such as certified nurses, home health aides, personal care aides, caregivers and companions. Factors contributing to a lack of care for disabled Ohioans range from low-pay, inadequate incentives to remain in a care field, and lack of sufficient funding for service systems. Due to the impact of the crisis, disabled Ohioans have gone without their basic needs and wants being met for years. Many have either been forced into nursing facilities or other institutions or have endured a lower quality of life and risks to their health and safety.

If you would like to share your story for this series, please visit our webpage at https://bit.ly/3HFz6rz or reach out to our Community Engagement Coordinator, Alexia Kemerling at akemerling@disabilityrightsohio.org.
All stories and information published in this series have been shared with explicit consent.

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