Sunday, June 24, 2018

CHAMP Camp 2018

Last week was my annual volunteer time at CHAMP Camp. This year marks 25 years since I first started going, and I still adore every part of it.

I started going as a counselor in 2000 and this was my 14th year in this role. The cabin I was in had four boys, two the same as last year, another camp veteran, and one newcomer. They all were ambulatory for at least short distances and could primarily do their own care. This made for very easy care giving for the 12 other counselors and I.

Tipsy Counselor watches Campers
Every morning, we were ready for breakfast well before time as well as for most activities. This allowed for great opportunity for the boys to spend time together, and for pranks. Every year has a theme with this time being "back to nature." Plastic bugs were a staple in decoration and various leafy Christmas decorations re-purposed.

Another cabin had a large inflatable poop emoji as a lawn decoration. One evening, my bunk mate camper, along with two counselors, relocated it to our cabin. It made various visits to each camper for a picture, my wheelchair, and a few other locations before being taped to the cabin's chimney. This prank resulted in many more with a conclusion of one counselor's mattress, and clothing, floating in the pool after the closing ceremony.

Through the years, I love working with the kids and watching some of them grow from one camp to the next. Our new camper this year was unsure about fitting in, but he soon realized he wasn't the only kid with a trach and participated in all the activities. By Thursday, he was rating us close to his visits to 6 Flags and his love of roller coasters.

As much as I enjoy camp, I also see how much work it is for dad and the caregiver I take for nights. They do much more than I can ever give back and I wish I could do more to ease their tasks. All too soon, the week was over and we once again made the eight-hour journey home.

I don't know how long God will bless me with the ability to work at CHAMP Camp, but I cherish the memories from each year. I will see what is brought to the quad life in the next several months and follow the path I'm given.

Sunday, June 17, 2018

Father is His Name

About a month ago, we observed Mother's Day. Today is designated to acknowledge the other parenting half, Father's Day. However, who is your father?

For my male parent, I call him dad, pa, pop, old man, and a few other terms. However, I rarely use the term given this day and that most adults use. That is due to one verse Jesus said in Matthew 23:9, "And do not call anyone on earth 'father,' for you have one Father, and he is in heaven."

In this passage, Jesus is referring to a spiritual head. Just as today, some spiritual leaders wanted the term as a sign of them being head of a congregation or group of people. Jesus reminded them that He is their Father, not someone who dwells on earth.

As a result, I almost exclusively only say Father when I am praying or reading Scripture. It helps me to remember who I am speaking with, someone that has supreme respect and is my Father in heaven. The few times I've used the term for my dad or grandpas, it doesn't feel right to me and that I'm using incorrect terms. I know this isn't the case for everyone, but it is my reasoning for the terms I use, or don't use.

In my years, I'm thankful for everything God has done for me through my dad. With the injuries mom and I received, he has had to do a lot to help keep us healthy and in a comfortable home. I know the responsibilities get overwhelming at times, but I know I can always rely on him to help when needed.

For several years now, his day has always been while he is helping me at CHAMP Camp as a counselor. I hope he's able to take time on his own to relax and do what he enjoys, but it depends on God's plan for our lives.

For this day, and week, be sure to give thanks for parents and all they do. Especially remember to look to our Father in heaven and remember His sacrifice that He gave for all of us. I look forward to one day meeting Him face to face when this quad life is over.

Sunday, June 10, 2018

Waiting Approval

If you have actually been reading this blog for a few years, you may remember 2014 was a challenge. I lost my insurance plan due to the Affordable Care Act and the new plan I was on decided I didn't need caregivers. The following months consisted of multiple appeals, talking with doctors, politicians, and the Iowa Insurance Commission.

After much prayer and trial, insurance finally agreed to cover my night hours. Working with the Department of Human Services (DHS) and Iowa Medicaid, days were able to be covered through a program called CDAC (Consumer Directed Attendant Care). As I said in last week's post, it requires a lot of paperwork for my caregivers, but it works to get everything covered. However, it requires approval every 6-12 months.

My last approval period was for a full year, starting from July 1, 2017. That year is nearly complete and all the documentation was submitted in early May for authorization past June 30. As of today, nothing has been heard for a decision.

Since my insurance upheavals in 2014, Iowa Medicaid has also made major changes. Some politicians thought it would be cheaper to privatize the insurance and handed it over to three different companies from out of state. Two of these companies have now dropped all clients and it's down to one company handling everything. A multitude of stories have come forward of people not getting necessary coverage, medical companies like nursing homes not receiving payment, and several other problems. With 2018 being a governor election year for Iowa, it has been one of the campaign topics.

Everyone who used Iowa Medicaid had to select one of these private agencies to handle their needs, except if you have private insurance and another Medicaid program. Since that describes my situation, I'm one of the 1% of Iowans that got to stay on regular Medicaid. Since there are few of us, there are fewer staff handling paperwork and it can take longer. It is cheaper for Iowa to keep me on the current system than to deny it and send me to a care facility, but we're still uncertain on what will happen.

Just like four years ago, I will continue to trust in God's provision and go where He takes me. In many ways, it would be easier for my parents especially if I was in a facility. At the same time, I would lose my ability to be able to be active in the community. In less than three weeks, I will have an answer. Until then, I will try to use the time God has given me at home to serve Him.

Sunday, June 3, 2018

Paperwork Problems

Everything in the medical world uses paperwork. The majority of it is now in digital format, but records are kept of absolutely everything. I'm almost guessing there is a requirement somewhere to count how often someone blinks.

It's not only the patient that has extensive records, it's also the caregiver. All license information must be current, as well as a host of other requirements. For my daytime help, they also have to have paperwork with the state of Iowa. Last October, everyone went through an update and had approval for another few years. At least that's what we thought.

Working for the state, it's always an uncertainty of when the previous month's hours will receive compensation. My main day assistant noticed her time from April was taking much longer than usual to go through the system. Finally after some investigation, she was informed that her paperwork wasn't in order and was not registered as a care provider.

When her pack of nearly 30 pages was completed in October, one signature on one page was missed. That sheet was sent to be corrected and put in the mail, but it apparently was never received. My county DHS worker showed in her information that my caregiver was approved, but digging deeper in other records showed the opposite. Now she has had to register again with the state and wait for approval that could take several months.

I'm thankful that resources are available for the assistants I need in order to stay home. There are many people in the United States that don't receive as much and are forced to have family for help or live in a care facility. Other countries may not cover anything and someone with a disability like mine may not survive such conditions for very long.

It can be easy to worry about the future and what tomorrow will bring when times like this come. However, God regular reminds us in His word to not worry, He is in control. Life may not always go as we expect, but it also increases our trust in Him. I will see what this first full week of June brings in the quad life and use what time I have been given to serve.