Raising early intervention and autism awareness through our amazing journey

Here we go again..

My last post was about the three page letter we wrote to social services to explain how we anticipated Milo to be denied the waiver he deserves. We faxed the letter to the RN, her supervisor, the social worker, her supervisor, and the supervisor’s supervisor, on May 14, 2015. Today, Saturday 16, 2015, we received the denial letter. I can only assume that our letter and the denial letter crossed paths in transition. I am so mad I could spit!; My grandma used to say that when she was mad so it seems appropriate. If it were a fair assessment it would be different, but it was not. It was a horrible excuse for an assessment. The fact that we lost his community based services April 30, 2015, and that it wasn’t even written in the denial letter, explains just how much area the assessment covered..barely any! They didn’t even cover the most important part that would put him at risk of a nursing facility?!

Let’s break this down-

Milo HAD services, TEN in-home hours a week. He lost those TEN hour in-home services on April 30, 2015. He now has ZERO in-home services which IS a change in his care since his services are GONE. We told them that numerous times, but do you see that stated in the most important part of the letter?? No. It states that there are NO changes in service. Unreal.
And we keep fighting on..

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The fight continues..

This entry will describe to a certain degree the discrimination that was conducted during our screening for the EDCD medicaid waiver. I have been told by mothers of autistic children, our son’s special needs physician, and from advocacy and society groups, that this happens way too often.

When we were given our son’s diagnosis of Autism, Global Developmental Delay, and hypotonia, we had no idea where to start to get help for our son. The last thing we thought would happen was to have doors close in our face one after another, and to be denied services time and time again. I was floored to learn that medicaid does not have a waiver for autism, nor do they allow a child with a sole diagnosis of autism to get any type of waiver until age 6, and even then they will probably be denied.
The only way we were able to have Milo screened at all was because he has hypotonia which is a medical disorder. Medicaid considers autism as a behavioral disorder because it is listed in the DSM 5.

Milo was granted standard Medicaid by a data entry error which entered our family income as zero. For waiver services, the income is based on the person with the diagnosis rather than the family income. Of course, Milo’s income is zero, but he was denied the waiver last year. We think that is where the data went wrong but who knows. When it was time to renew medicaid, we were told about the mistake and informed it would end in 30 days. So we quickly applied yet again for the EDCD waiver. That is when all of the heart breaking discrimination began..again.

I called to speak with the supervisor of the social worker that was part of the screening team last year. I thought it would be a simple answer to how we could apply again. We were told that the case would not be opened again. What? We can’t even have our son try for help again? I argued with this man for thirty minutes and he finally agreed to LOOK at the case. He called back a few hours later and stated he was only going to open it due to the hypotonia. I thanked him, which was followed by him stating he wasn’t doing me any favors. Ummm..okay.

So we finally had a date set for the screening. We thought for sure it would go well; we would have a new pair of eyes and ears. Oh, we were very very wrong.

You will see the statements that were made in the below letter that my husband and I wrote and sent. In the letter we did not go into the tone of how these comments and actions were made, but it was the worst you could imagine. We were degraded, not heard, and lied to, in our own home by employees of Social Services. My husband and I were both in tears as they left. I hope this letter gives a glimpse of how the past few months have been for us. I’m not sure if my son will get the medicaid waiver that he deserves, but this is not over.

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I am researching and learning quite a lot. Self-funded insurance plans (which we have) through your employer do not have to follow state autism mandate because they are governed by federal law. So it’s more of a “do as I say not as I do” order since some companies in Virginia don’t have to follow state law. This is why our BCBS plan doesn’t cover autism treatment. And what is worse is that we still haven’t been able to get the medicaid waiver for our special needs child to obtain special services even though he has been diagnosed with a developmental delay and hypotonia in addition to autism. Someone tell me how this is okay? Sounds like I will be gathering information to present to Byron’s company in order to convince them to follow state mandate. Thankfully, Autism Speaks has a 137 page guide for this which will allow me to prepare this fight..and I will fight.
The link is: https://www.autismspeaks.org/sites/default/files/docs/gr/erisa_tool_kit_10232014.pdf
Please take time to at least scroll through the slides they provide. As I said, the autism community needs all the help we can get. The word needs to get out. If we don’t get help for our children, they will eventually become wards of the state. They can either fund the treatment now, or spend the money later when they are adults because they chose not to fund earlier. We will also lose adults that would have had the opportunity to contribute to society, as well as had the chance to thrive as a human being. Sounds not only to be a financial issue but also a human rights issue. Now that should be interesting for the state and federal levels in the future, won’t it?? They are making a HUGE mistake and something needs to be done now! We NEED your help and support!!

Thursday, April 2, was my birthday and World Autism Awareness Day. I can’t think of a better way to celebrate than to see my friends, and my daughters and their friends, where blue to support awareness. It was a wonderful day full of happiness and A LOT of blue !

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April 3rd however brought about some very different feelings. We received notification that it was time to reapply for Milo’s Medicaid. Apparently you have to renew it every year, and with this being our first year we somehow missed the date. We really didn’t think it would be at all and issue given that he was granted the service specifically for treatment purposes. We thought wrong. According to the representative, we were granted Medicaid by a fluke and incorrect data entry. Someone had entered our household income as zero. Of course we had given them all of our true information including Byron’s employer etc., but there happened to be a mistake upon entry which enabled us to get proper treatment for our sons early intervention. So on April 3, 2015 we were told that our Medicaid will not be renewed, and the end date for services will be April 30, 2015. No services. None. Zero. Unless we pay out-of-pocket which will be over $29,000 a year.

Last year after Milo’s diagnosis we were given a lot of information. We felt assured and confident that we would undoubtedly get services for our son who desperately needs the help so that he can grow and succeed in life?! I mean, how would he not be granted what he rightfully deserves? Wrong.
We applied for the EDCD medicaid waiver. For those that don’t know, there are waivers that, if you meet the requirements, you will be granted proper therapy treatments, respite care, equipment for special needs if needed, all with having a medicaid waiver. This is an option because clearly, very few people have funds to support their special needs family member. The waiver funding is not based on income because it is about the child (or adult in need), not other members of the family. To our surprise, we were denied and below you will see in the letter their reason for the denial.

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The reasoning was unreal! We have an innocent little boy diagnosed with autism, developmental delays, and hypotonia, and he can’t get funding?! With having a small breath of strength, we had to fight it. We wrote a letter, weak yet adequate. After writing this letter we received another letter saying their decision was upheld. So we had a diagnosis, prescription for therapy: OT, PT, speech, and ABA, yet no one could help us. I was devastated- it was a very dark time. Then we get a letter with a medicaid card attached stating we now have coverage. Wait, what?! We took off getting assessed for ABA and speech since those were the most crucial. We were in! We didn’t know how but we knew we had medicaid. I honestly thought we had the waiver and they someone changed their minds. I was emotionally and mentally exhausted, at the time could fight no more, and didn’t dare question the decision. After all of the assessments we now had the ball rolling. I was still emotionally weak due to lack of help and worry, but I was ready to take on whatever it took so our son could have the best possible chance.

In the past six months, Milo has gone from having no words at all, to speaking in short sentences. His behavior has improved, walking up/down stairs has improved but he still needs assistance due to hypotonia (low muscle tone), eating with utensils, trying new foods, communication has drastically improved both verbal and non-verbal (pictures), he is now able to be with peers his same age and even interacts with them, we are able to take family outings; brief yet successful- basically he is living proof that early diagnosis and intervention is the best way these kids have a chance. But now it’s gone. This innocent little boy could get help for a year only because of a careless blessing.

I am proud to say that I now have A LOT of fight in me. My son doesn’t have a voice in this area, so I am charging full force into this war zone and I will not take no for an answer. I will fight, and keep fighting by my God given strength for what my son deserves, because He has now equipped me with The Full Armor of God.

Just As Ephesians 6: 13-17 states:

“13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God”

I will most definitely update and share the status of the applications, as there are many. I will say that we have so much support and love from our friends, and we are so very grateful. I have had so many people express to us how we have helped them. My primary purpose of this blog is to:

1. Help parents, caregivers, aunts, uncles, friends, etc. recognize the early signs of autism. The earlier the diagnosis and interventions begin, the greater the chance of successful treatment is for children of the autism spectrum.

2. Help people understand what autism actually is, and to help them accept the children and adults on the spectrum for who they are. The behaviors that you see are merely a symptom of the difficulties these people face.

3. Help the public know that when it’s time to “light it up blue” on April 2, 2016, that we need you. Our children deserve for people to know that there is very little help now, and it’s time this changes! We need for adults to take part, but we also needs schools and children to take part. EVERYONE needs to be made more aware because autism is increasing more every year. Our community needs help and it is done by you.

I think some get offended by the awareness aspect. I’ve talked to some parents that just want acceptance. Well, sadly we won’t get acceptance if people don’t understand. I want to make you aware and we need your participation.

Regardless of what happens with Milo’s therapy, we will continue to fight for him. We will be the voice that he does not yet carry. He is worth every second of the fight. Thank you for taking the time to read this post, and PLEASE share the information. Things need to change for our kids with autism..and NOW!

An Elementary Experience

I went to an elementary school in Chesterfield, Virginia, during my K-2nd grade levels. The teachers taught me average grade level skills. I don’t have many specific memories of lessons that were taught, but I do have many other memories of O.B. Gates elementary school. I remember the love that was given to me by my teachers, as well as many others. My mom was a teacher at the school and she had many teacher friends that seemed to love me as though I were family. I just remember an overall love expressed from teachers, assistants, custodians, etc. that you don’t find in many schools. But there was much more to that elementary school than the staff.

When I started kindergarten I remember our class having the opportunity to help the special needs children with their lunch. One student was chosen each week to sit with one of the special needs classes and help with whatever they needed. It was also a good time to interact with the special needs students and the staff. I know I was only in kindergarten, but to this day I still recall my week in the lunchroom eating with the students. I remember feeling like I was really useful and was so happy that I could help them.

My elementary school was unique in that it taught students from pre-school to age twenty one. I also recall the principal showing our class the section of the school that was catered to teach the older students basic living skills. The one section was set up like a house- a kitchen with a working stove and refrigerator, a bedroom to learn how to make the bed, etc. You would think that a little 5 or 6 year old child would shrug it off as just another thing, but clearly I didn’t.

After I was taught about the special needs students, I wasn’t scared to pass them in the hall. I was happy to say hello even if they didn’t wave back. I looked forward to the programs that included every student, not just regular ed children. One really exciting time was listening to one special needs teen play the drums..and that boy could play!

I was only a student at O.B. Gates until 2nd grade because a new school was built in our zone, but those three years were the best elementary years. The administration and staff really took the time to teach the children about the special needs community AND included them in their education. Maybe that wasn’t the intention, but that is what I took from it.
Years later, I have my own special needs child. I can only hope to accomplish a fraction of what my elementary school did in raising awareness. I can’t think of a better thing to teach a child, not only about special needs, but about acceptance, love, compassion, and understanding of those that aren’t like you. Thank you, O.B. Gates Elementary, for teaching me more than you could ever realize.

Milo has been working so hard in ABA therapy. He has this 5 days a week for two hours each, as well as speech twice a week, and 5 hours of peer inclusion per week. He is going on his 6th month with ABA.  I can’t tell you how much he has improved in a short time.  When he started, we figured that he didn’t know what was going on around him because he could not communicate anything to us on his own.  I remember the first time I saw the therapist work on cards with Milo, My eyes were full of tears.  He really did know a lot through pictures. You will hear the therapist ask him to do random things like “touch your head” in the middle of the card series. It actually has a purpose- one of which is to help him with transition since this can be difficult for children with autism- which is true for Milo.
His language has also exploded in the last few weeks. He seriously has new words daily! This kid is on fire!
Please see the video which was taken last week, 03.25.15.

To the past, present, and future individuals that we may have inconvenienced or annoyed while in public with our special needs child-

We will continue to take Milo out in the community, which includes eating at kid-friendly restaurants. (So friendly in fact, that they have a “kids eat for a dollar” night?!). Why will we continue to do it? It’s not because I think we have the “right” to be there. It’s not to exploit our child. It’s not to annoy other people. It’s not because we want to enjoy a meal. It IS because we want our child to face every obstacle he might face, and for him to know he can live in a world that is not designed for his way of thinking, and that is okay! Do you think we “enjoy” our attempts at dining out with him? Absolutely not! We have to prepare ourselves, our family, our friends, and Milo, that it is going to be a trying experience with the many feelings that accompany it. I would much rather play it safe and stay home so that he feels comfortable, but life isn’t comfortable, and he has a lot more to overcome. So yes, we will continue to have meals out, and I’m sure it’s not the last time I will come home and cry and be angry and hurt, but I surely am not doing it for me. I am doing it for my son, and he deserves to be taught and to learn just as anyone else. So for the two women that said “it’s not cute! We don’t appreciate it?!” during our meal last evening at a kid-friendly restaurant, I say get used to it. With autism on the rise, and with the statistics currently assessed at 1 in 68 children diagnosed, you’re better off staying at home because it surely isn’t getting any better. And for any parent of a special needs child of any type, I say go out in the community and be proud. Be proud that you love your child enough to give him or her every opportunity that any other child deserves. And be grateful, as I am, that the good Lord chose us to be the parents of an amazing and brave new life!

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