Seizure Diaries: Care of Charlie
December, 2024
Stephanie Hooper’s latest message to the Hooper family:
“I just wanted to let you know that I wasn’t approved for the waiver to get paid as Charlie’s caregiver. Apparently, he is denied the waiver service’s because he can feed himself, and wash himself in the shower. It doesn’t matter that someone needs to be there during that time in case of a Gran Mal seizure. Month in, month out, Charlie averages between 70-90 seizures per month. He also has documentation from his neurologist and neurosurgeon that he must not be left alone at any time, due to the condition of his disability. I haven’t had a paycheck in 2 years now, but I called several caregiving agencies to see how much they charge per hour. It averages between $29.00 up to $34.00 per hour. So it wouldn’t be justified for the trust to pay that amount, because I wouldn’t be able to start a new job at anywhere near that amount per hour in this area. So, I will keep Charlie as my priority, and I don’t have any other options through the state at this point. We are stuck between a rock and a hard place with the current guidelines pertaining to the paid caregiving waiver approvals.”
Nancy Hooper Caplan did some research through her company and discovered:
“In Pennsylvania, family members can be paid to be caregivers through Medicaid programs. The Personal Assistant Services (PAS) program allows family members to be compensated for assisting with Activities of Daily Living (ADL) and instrumental activities of daily living care, such as meal preparation, mobility, housework, shopping, grooming, eating, bathing, toileting, and laundry[1]. Additionally, the Community Health Choices (CHC) program provides services to individuals aged 65 or older and individuals with physical disabilities aged 21-64 years who meet a nursing facility level of care[2].”
“Eligible caregivers can earn around $15.00 per hour[2]. For long-term disability, benefits typically include 60% of the participant’s earnings, with a maximum benefit of $2,000 per week[3] other benefits[4]. The benefits may be offset by other qualified disability payments such as state disability or Social Security Disability Insurance (SSDI) payments[5]. If you need more specific details or have any other questions, we should talk.”
Laurie Hooper reports back: “I just sent this to Steph: ‘I can’t understand why you were turned down. Looking at the PA website on the Caregiver Support Program, Charlie clearly should be covered. He fits both the Category 1 definition as an individual age 60 with functional deficits and Category 3 as an individual age 18-64 with a disability. York County ‘s Area Agency on Aging is giving you the run around. You may need to go there in person to get someone to take a closer look at his case. Can you make an appointment to go there? I can come up and watch him so you can go see them. I’m sure you have the phone number and address [6]. If not let me know and I will send them to you. If you’ve already done all this then a different plan is needed.'”
Laurie went on to ask: “Steph, would it be helpful if the Trust gives you a certain amount each month to cover things like food, gas and your car payment? Are you comfortable telling me how much you pay for those on a monthly basis? I’m not trying to pry but to come up with ways to help you two out with your not being able to work.”
Steph’s reply to Lauris’s text about sending them some cash to cover the fact she’s unable to work because of taking care of Charlie.
As to addressing my car payment . When I resigned from my job at Walmart on 5-6-2024, after being on an unpaid leave of absence since December of 2022, I took out $5,000.00 from my 401(k) plan to pay my car off. So, I don’t have a car payment. I had no other option for Charlie. The neurologist, and neurosurgeon both told us he can’t substain another hard hit to his head, and he is not to be left alone with the amount of seizures he has now. I have kept him safe so far. I will always do what is best for him.
I left my job where I was 4 months away from my 20th year of employment. I was putting 10% of my gross income bi-weekly into my 401(k) account with a company match of 6%. I was also in an employee stock purchase program that I put in $100.00 per paycheck bi-weekly with a company match of 15%. I also gave up increasing my SSI earnings for retirement because I have no income.
I am not telling you this for pity, or sympathy. I despise both of them. I received a phone call from Millie LaFontaine approximately 6 months after I started my leave of absence. She kept on telling me it was “time to ease myself back into the workplace.“ I asked her three times during this conversation “what about Charlie? What about what is best for him.” I didn’t get any response to these questions. Charlie was sitting next to me for this whole conversation, I had my phone on speaker in case he wanted to talk with her. He told me after I hung up with her, see , my family isn’t worried about me, they are more concerned with telling us what to do. This totally broke my heart for him. He had been telling me this since I have known him, and I never really understood how true it is. None of you know how much this hurt. I went through the transition of a full-time employee, to a full time caregiver without the emotional support of the Hoopers.
I don’t carry any ill feelings towards any of you. I will continue to do what I need to do for him. I just thought you should know that we were both in therapy at different times to deal with the feelings we had. I distanced myself from all of you, and so did Charlie. He still has a lot of anger. I don’t feel any of this. I am past all of that. I wish all of you could walk in our shoes for just a week to see what this is like for us. I do understand that everyone has difficulties in their lives. We do pray for all of you every night. I am forever grateful to your father for what he did for Charlie with the trust fund. I am also grateful for Charlie. He is never a burden. No matter what, I will always be by his side.
[1](https://freedomcare.com/can-a-family-member-get-paid-to-be-a-caregiver-in-pennsylvania/).
[2](https://www.chosenfamilyhomecare.com/get-paid-to-care-for-a-loved-one-in-pennsylvania-a-guide/)
[5](https://icfonline.sharepoint.com/sites/Intranet/hr/SitePages/FMLA.aspx?web=1).
[6] The agency phone number is 717-771-9610 and address is 2401 Pleasant Valley Road in York, PA.
Henry E. Hooper 