Anger for Casey! Let’s Fight Back!

Sometimes there are posts on other pages and blogs I want to share and they just don’t want to share right. I found one from my friend over at Conversations with Casey on Facebook. It’s not sharing right so I’m copying and pasting it here. It’s LONG. BUT it’s the reality we face wondering about caring for our children’s future. This reality hit home HARD for me. I’m ANGRY for them. I want to change a system for kids like Casey. So please read this and if you want to comment, I will share them with them.

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Conversations with Casey
6 hours ago
Wow – fair warning…this post is long, real long…but it is a story that must be told…

I recently had a reality check provided me by the state of Oklahoma. You see every state has their own way of providing services to those with disabilities who live in their state. In Oklahoma we have two state run programs because in the state of Oklahoma if you were diagnosed with an intellectual disability before the age of 21 then you are not as valuable a member of society as, say someone who is considered “normal” before adulthood. 

Yes, I just typed those vile words, a sentence that shouldn’t have to be written in the the year 2014. A situation that should never happen in a country that prides itself as being the best, the most caring, heck here in the USA we even consider it our duty to be the guardian for the human rights for those in other countries. 

But there it is, no way to sugar-coat it, no way to soften the blow…my son is not considered as valuable or worthy to society because he is considered mentally deficient.

I try to keep things light and positive on this page. I do that not because we don’t have hard times, I’m not trying to hide the negative aspects Autism/Epilepsy or sugar-coat things to make it seem as if I’m an old pro at this. Keeping things positive helps me to stay positive and if there is one thing Casey deserves from life it is to be surrounded by happy, positive people, especially his momma.

This page is a place I can focus on the positive. It helps me to notice the many blessings I have in my life. Things that at one time might have gone unnoticed I now take the time to notice because I am watching thru your eyes. Your likes and comments fuel my desire to record and share the many joyful moments that life with a special needs child provides. But in the background, when your special needs child becomes a special needs adult, you start to worry about the future, especially if there are medical as well as developmental concerns. 

A year ago I started looking into what services were available for Casey. We were virtually homebound because we needed a wheelchair van and I was disappointed to find that there wasn’t help for that and since those things are rather expensive ($60k+ brand new, $40-50K for used) I took to Craigslist and after an exhaustive search I found a 2005 dodge caravan with 70k miles for $13k. Thanks to my amazingly kind banker, who stretched the terms of my loan to the limits to get me a payment I could afford, it has opened up the world to us. 

During that search for services though I discovered that in Oklahoma the program to assist those who are developmentally (intellectually) disabled has a 9 year wait list…yes that right NINE YEARS!!! At the time I thought if I could just get his incontinence supplies provided, which have cost as much as $200/month, I could better afford a payment for a wheelchair van. 

After failing to recieve the application that they repeatedly sent me, I got a phone call one night around 9pm from the case worker trying to send it. When I answered the phone she asked for someone unknown to me. I told her she had the wrong number and she asked, well aren’t you Casey’s mom? By the end of the conversation she figured out that Casey had already been on the wait list as a child but when he turn 18 they sent an application to see if I wanted him moved to the adult side, which would have provided the incontinence supplies, but they made a clerical error and sent it to my PO Box but under the wrong name and the Postmaster sent it back address unknown. So Casey was removed from the program list. 

She then proceeded to tell me that I could fight to get Casey moved to the top of the list but I would be bumping someone else to get there and at that time the next person in line was an elderly lady who had cared for her son all her life, fell and broke her hip and after a long recovery could not get him back out of a nursing home until she made it to the top of the list and could get assistance. Of course I didn’t want to bump anybody from the list and we are making it just fine so I went to the bottom of the list. 

We have 8 years left on the wait list.

Recently though, I discovered a program meant to help caregivers to continue to care for loved ones in their home. The Cash & Counseling Program is a site you can go to to see what is available to caregivers in your state (it says senior care but also includes adults with disabilities). And I strongly suggest that everyone with a special needs child who you believe will need assistance into adulthood go to this site and see what is available to you in your home state. Maybe research other states to determine where you might want to retire. 

Unfortunately, in Oklahoma there are two programs, segregation at its finest, the Advantage Program is for those who aren’t cognitively deficient before age 21 and DDSD in-home support waivers services is the program for those who are.

The ADvantage program provides (seemingly with NO financial cap) 24/7 skilled nursing care if needed, case management, personal care assistant as needed, adult daycare, home delivered meals, home modifications, hospice occupational therapy, physical therapy, speech therapy, specialized equipment, needed supplies, supportive restorative assistance, assisted living and CD-PASS which provides funding to hire a personal care assistant of their choosing (even a family member) rather than a stranger from a home health agency. There is NO WAIT LIST for this program – you need it, you get it…as long as you are cognitively “normal” thru age 21.

DDSD’s program (for those like Casey) is a non-cash payment service providing services through an agency contracted through the Oklahoma Healthcare Authority (so no family members allowed). They will provide a personal care assistant (I was told 7 hours a week max) a limited amount of respite care (I was told 4 hours a month) and certain supplies. There is a financial cap; no more than $16k/year and a 9 year wait list for ANY HELP AT ALL. 

The nurse who came to my house on Friday to see if Casey was eligible for the Advantage program was incredibly kind, she sincerely wanted to help. She said medically he qualified for the ADvantage program based on the severity of his LGS Epilepsy and the need for emergency rescue medications but that the program had an automatic disqualification for anyone diagnosed with mental retardation or other intellectual disability before the age 21. 

My voice (which is still hoarse anyway) cracked with emotion when I asked her; “Are you telling me that if Casey had been normal cognitively until now then stupidly went out drinking and driving, got into a wreck and became mentally and physically impaired to the point of needing complete care, that he WOULD qualify?”

She had a shocked look on her face as the realization hit her that that was EXACTLY what she was saying!!! He would have qualified for all the care listed above. I figured up just the cost of just a nurse at $20/hr, 40 hrs/week x 3 shifts/day, and it came up to $115,200 / year…thats almost $100,000 more per year than the $16K allotted to those deemed mentally deficient.

She said that what I was doing (complete medical and personal care, laundry, meals, transportation, etc) was the work they would send up to 5 different people to do. Virtually an on-call nurse, aide, housekeeper, speech and physical therapist 24/7. (I call this being a mom who loves her kid, haha)

She pointed out that my health was being affected (mainly neck and back injuries) and encouraged me to fight to be bumped to the top of the list. That even a little assistance would help. So I told her the story I had been told and that I didn’t want to bump anyone, that I was making it just fine, I was just concerned about the future. But she said I needed to think about my child and what would happen if I got hurt and couldn’t care for him. 

I am blessed to have a large and loving family who would do whatever it takes (and have done plenty) to be sure Casey is cared for but she said she would look into it for me. 

Last night I got a call back from her, I could tell by the sorrow in her voice that she was informed there was nothing she could do. They told her to encourage me to seek support from my community, churches, etc. 

So there was my reality check. the state I live in, the state I pay taxes in doesn’t consider my son as valuable or worthy as everyone else. 

I am not telling you this (rather long, sorry about that) story for sympathy or because I need anyone to worry about us. Like I said, I am blessed, beyond words, with an amazing family who would sacrifice, have sacrificed, to be sure Casey and I had everything we needed. I’m not hurting for anything I can’t live without and I won’t let Casey want for anything he needs either. 

I started this quest because I was worried about the future, what would I do if my current income was no longer available? How would I continue to care for Casey full-time? I am a licensed registered nurse, so there are always jobs I could get, but who would I ask to give up their lives to care for Casey while I worked and how would I pay them? 

This past weekend my father asked me to go with him to visit his cousin who is in a rest home several hours from us. She had some health concerns he wanted me to talk with her about. The rather large community room/cafeteria where we visited with her was gaily decorated for the 4th of July and they were preparing for a community party in the enclosed courtyard. The nurses and aides we saw were all friendly and caring toward their charges. But there was one resident, sitting in her wheelchair with contracted limbs wailing pitifully with sadness or pain. Some were moaning, some mumbling to themselves. A man who looked to be in his 40’s pulled himself past us in his wheelchair by shuffling his feet along, he was wearing a bright blue plastic seizure helmet that brought tears to my eyes. 

I looked at Casey, stimming away with his fingers, eyes wide as he kept looking with frightened glances at the woman crying piteously. My mother noticed the same thing and asked Casey if he’d like to go wait outside in the courtyard while dad and I visited. He jumped at the chance to escape the sights and sounds that were overwhelming him. 

My heart broke when I learned that my dad’s cousin’s roommate, now elderly herself had actually been in that home, in that semi-private room since the age of 19!

…whatever it takes, I cannot let that happen to my son! There has got to be a better way, these people matter, they have worth, they have value, they deserve better than to be thought of as less than anything or anyone! 

…if he contributes nothing more to society than the joyful moments I share with you guys on this page then that is enough! He is worthy…he is joy!

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This is her reality. Today. In 2014. And it’s wrong! So very very wrong. Why wouldn’t we want to keep families together when someone like Casey will thrive and have less stress than to remove him and limit him? Why would we add stress to families FIGHTING for their adult children rather than going back to the archaic ways of institutionalize them (even if it’s at a rehab or nursing home)? This is where we need to rally and cry foul! I’m angry for all families having to deal with a form of this biased thinking.

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