Raising early intervention and autism awareness through our amazing journey

Archive for June, 2015

I’m shocked, and you will be too.

I have conducted some of my own research on Medicaid waivers and available help for individuals with autism.  I’m sure you will find these facts just as disturbing as I do.

The information can be found on the Medicaid link below.

 

“Virginia has no definition for ASD in a written statute. For diagnosis, the state refers to the DSM IV1 Diagnostic Criteria for Autism. A diagnosis of ASD is generally not sufficient in and of itself to qualify for services; rather, eligibility for services is based on need. It is estimated that more than 90,000 individuals in Virginia are on the autism spectrum (Commonwealth Autism Service, 2013)”. – (Yes, you read that correctly; there is no written statute of a definition.  Because there is no definition, the state is able to get away with using the reference of the DSM V.  Instead of attempting to find a true and factual medical definition, they went with the easiest “reference” which of course puts the state at an enormous financial advantage.)

“The 2009 Report of the Joint Legislative Audit and Review Commission to the Governor and the General Assembly of Virginia reviewed the services available in Virginia for ASD. Some of the issues identified in the report included poor coordination of programs, a lack of depth of early intervention services, an inability of the school system to fully address the needs of students with ASD, and limited supports to help adults with ASD achieve independence”. – (As you can see, the issues that were identified SIX years ago have not budged, and I honestly feel there has been no desire to do so.  And unless there is an ear-piercing noise, I doubt we will see any change.)

“In 2011, Virginia passed legislation that required state-regulated health plans to provide coverage for the diagnosis and treatment for young children with ASD aged 2–6”. – (Our health insurance plan is federally funded, giving the employer the option to take the mandate.  My husband’s employer has opted out.)

Below you will see a list of Medicaid Waivers in Virginia.

VA Children’s Mental Health- Children aged 0-21 with serious emotional disturbances  (does not meet this criteria, as he has no “emotional disturbance” to identify)

 

VA Individual & Family Developmental Disabilities Support*- Individuals aged 6+ with DD or related conditions, including autism  (does not meet this criteria, as he is three years old.)

 

VA Day Support HCBW for Persons with MR* – Individuals aged 6+ with ID  (does not meet this criteria, as he is three years old.)

 

VA Technology Assisted- Individuals of all ages who are technology dependent  (does not meet this criteria, as he is not tech dependent.)

 

VA Alzheimer’s Assisted Living- Individuals aged 65+ and aged 18–64 with Alzheimer’s disease or related dementia  (does not meet this criteria)

 

VA Elderly or Disabled with Consumer Direction- Individuals aged 65+ or individuals of all ages with a physical or other disability ( DOES meet this criteria, but so far he has been denied.  We have submitted an appeal.)

 

VA HIV/AIDS-  Individuals of all ages with HIV/AIDS  (does not meet this criteria.)

 

(more…)

Advertisements

Attorney, appeal, health issue update, and living life!

Attorney and case update:

I have had the pleasure of speaking with Jonathan Martinis, who is a disability attorney in Washington DC.  This kind soul has spent time emailing and even speaking to me on the phone.  Of course he had no reason to speak with me if he didn’t want to; I never gave him anything for his time, nor did he ever ask.  He only wanted to help, and I will be forever grateful.  It’s people like Mr. Martinis who change lives.  For example, he represented Jenny Hatch a few years ago.  You may have heard the name since it was a nationally know case.  The case involved a young woman with Down’s Syndrome who went through horrible experiences in and out of group homes because she was under guardianship of her mother who had the right to place her there even against Jenny’s will.  Jenny had her rights stripped in the group home.  She pleaded to live with her employers who wanted to take her in, but she was not heard.  That is until Mr. Martinis stepped in.  It was a very ugly and painful year but finally they prevailed, with Jenny being the first person with a disability who now has the right to supported-decision making instead of a guardianship.  She is now able to live with the family she loves, continue the job she chooses, participate in her church and in community projects, and to simply enjoy life with the rights she deserves.  With Mr. Martinis being an extremely recognized attorney, I never thought I would hear back after contacting him, but I did.  He is unable to represent me due to his location, but he provided me with the names of people who could.  Even though the Disability Law Center here in Richmond, Virginia doesn’t take many cases, I do think we have a good chance.  I am in the process of providing information to the Law Center, but I do believe after they hear all of the information and evidence we have, they will see that this is a great case to fight.  I ask for prayers that we are able to be represented to fight for not only our son, but for the rights for many who have been wrongfully denied support.

An update on the appeal:

We have submitted the appeal letter.  We hand-delivered the appeal letter and had it stamped and signed proving it was received.  DMAS states that the appeal letter needs to have a specific and detailed description of the reason for appealing.  This is a lie.  This is one more tactic they use to gain information so they can plan their defense in hopes to uphold the denial.  You do not need to give a reason why.  Additionally, they typically schedule their appeals to be held by phone.  You have the right to have a face-to-face hearing which is to your benefit.  In our letter, we simply stated:

“We would like to appeal the findings within the attached letter.  We request that this appeal be heard face-to-face (in person).”

Then we signed it and attached the denial letter.  That’s all they need and all they deserve.  You on the other hand deserve TO be heard fully and you have the best chance of being heard in person and without giving them anything to argue.

(more…)

Personal stories..now we are getting somewhere!

I’m loving where this is going.  I’m starting to hear brief personal stories of those that were denied.  In Virginia, the screenings are extremely discriminatory towards individuals with autism, and in some cases like ours, it was 100% predetermined.  I did not edit the writings below, mainly because it wouldn’t be quotes if they were changed.  Here are a few:

“I live in Henrico. When I called to set up the screening the lady on the phone said my son would meet Functional criteria and maybe the medical but not the imminent risk. She said “I’ll arrange the screening but it sounds like he isn’t going to meet criteria. So she already made up her mind before even coming out. They sent the letter about what to have available, all the medicines and paperwork. They barely looked at any of it. It was frustrating to say the least. I told my husband when they left that they already made up their minds ahead of time. I have sent an appeal letter in and I’m waiting to hear back. My friend is having issues in Chesterfield too for her son.”

– “M” in Henrico County, Virginia

“Upon applying for out waiver in 2013, a health department nurse came to our home for the screening. Meanwhile I had my sons behaviorial therapist/advocate at the home with us during his screening. The very old school nurse pleaded to tell me how we were nor going to be approved for my sons autism, that this waiver was for elderly people. I just Piered over at my sons therapist with confusion and she nodded me to go forward. I then explained to the lady that I was directed from spectrum transformation group,who diagnosed and was helping my son, and they have given me pamphlets and instructions on how to apply for the waiver. The health department nurse then flips her who script and starts talking about her nephew with austim ( who she knew little to nothing about) I was completely astonished with how many health care officials have lack of knowledge of the austim spectrum. The story she told me specifically stated ….my nuphew had autism and began typing to his mother on the keyboard. The mother was so excited he was communicating but she was making it all up bc when she left the room he wasn’t doing it anymore! … I wanted to come across the table at that lady. Just bc he isn’t doing it for others doesn’t mean he wasn’t communicating with his mother. My son began communicating on his tablet and blossomed from there. Watch out these health care officials have no knowledge on autism.”
– “A” in Chesterfield, Virginia
“i relate! especially lately.
funny how some pity people with disabilities. ….misplaced pity. what is a pity is how our voice is not heard, causing the lack of services and/or items we essentially need to be the best/healthiest we can be. that’s what is a pity!!”

– “I” in Williamsburg, Virginia

I think what you are doing is very commendable. We have the exact same problem in Newport News/Hampton area. If a kid has autism, the screening team attempts to talk the parents out of the screening on the phone and the child is denied 100% of the time unless there is also some major medical issue like being in a wheel chair, feeding tube (even that doesn’t always get it), tumors, seizures (again even this doesn’t always help), etc. I’ve even been told that nursing home placement isn’t appropriate for a child with autism, but psych may be. Parents of children with autism need as much help (in some cases more) than those of kids with medical needs. Wouldn’t it be great if there was an autism waiver in Virginia like there is in North Carolina? Maybe that’s what we need to fight for. Companion and respite services for people specifically with autism. Keep fighting this fight! When you win, it will set the precedent for so many others to follow.

– “J” in Newport News, Virginia

As you can see, it happens far too often.  It’s disgusting that this has been happening for years and it continues to happen.  NO ONE, regardless of need, should have to tolerate such discrimination.  It’s not only discrimination, but a complete violation of human rights!  I do hope I get MANY more comments.  I also have a Facebook page titled “Medicaid Waiver Denial” and I would love for you to join, be supported, and get the latest updates.

Again, thank you so much for reading!  -Wendy

Getting personal

We have got to win our fight for our son’s Medicaid EDCD Waiver. Winning will allow us to resume our regularly scheduled therapies as well as grant access to respite care. We could really use the respite care.

I have epilepsy. The epilepsy causes abnormal activity in my brain. I call it “dead brain’.  My neurologist calls it “chronic sleep deprivation”.  That was a couple days ago at my appointment.

I explained to my neurologist that I had recently visited my eye doctor to check my vision because it had been a bit blurry.  I was feeling nauseous for no reason.  I have been waking up with migraines, forgetful, unable to focus, difficulty completing tasks that used to be simple, trouble putting a complete sentence together, and the most scary, I have had twitching during the day which could be a sign of seizure activity breaking through.

“What’s your sleep been like?” he asked.  “I miss sleep” I said.

And then he started to explain chronic sleep deprivation.  It is actually more serious than I could imagine- very detrimental to your health, especially for someone with epilepsy.  He couldn’t write a script for more hours, but he would surely follow up to check my epilepsy medication levels.  He stated that somehow I was going to have to find a way to sleep if I was interested in providing the best care I can for my son…or interested in functioning.

Here’s an example of how things are:

“Have you seen Layla?” I asked my neighbor in a phone call after being awake; only sleeping for three hours in a twenty-four hour period which has been the usual.

“I let her out to do her business.  I’ve called her name and she’s not in the yard.  Have you seen her in your yard or near the road?” I asked.

She said she hadn’t but she’d keep an eye out.  That was around 8am last Saturday.  My next door neighbor and I had a date to take the kids to the berry farm at 9:30am and I was determined to fulfill my commitment even though I was so sleepy I couldn’t think.  Dead brain.

“Did you ever find Layla? she asked.

Embarrassingly, I answered her question.  I had walked upstairs to let my husband know I was leaving, and to let him know that the neighbor wanted to play some golf if he was up for it.  (He was sleeping since his shift work was complete for the time being).  And guess what?  Layla was in the bed with him.  She hadn’t run away, nor had I even let her outside.  I was probably in a dream-like state for a moment (micro-sleep) and/or I was truly hallucinating.  I didn’t realize it at the time, but after hearing my neurologist’s explanation it’s actually very scary.

Thankfully my neighbor and I are best friends so she wasn’t surprised.  I tell her everything and she knew about our son’s sleep problems.

Did you know that long-term chronic sleep deprivation causes death in lab rats?  I do now after my visit with my neurologist…as if there weren’t already a lack of comfort before my appointment.

Which brings me back to Medicaid.  The EDCD Waiver would provide respite care since taking care of a special needs child can be exhausting.  It would allow us to actually get sleep so that we can function and better support our son. He needs support from parents that are 100% engaged and present in whatever the current activity is. He more than needs that, we owe it to him. If we aren’t on our A-game, we are not helping him to the fullest extent of our abilities, and we cannot accept that.

And now for a bit more about my epilepsy…

I’ve had epilepsy since I was a teenager; seventeen years old to be exact.  I suffered my first grand mal seizure in front of my parents one morning.  The doctors don’t have an explanation.  Thankfully for my parents, the brain scans revealed no serious issue.  The test that confirmed epilepsy was called an EEG which is short for electroencephalogram, to detect the presence or absence of photoparoxysmal response (PPR) to intermittent photic stimulation.  To explain the test in simple terms- I had a bunch of electrodes attached to my head like Frankenstein while I stared at a flashing light that was one inch away from my eyes.  They could detect seizure activity from the electrodes on my head.  The doctor explained to my parents that I most likely had been having seizure activity in my sleep for awhile.  My symptoms and seizures, along with the positive tests, are actually a pretty “textbook”  definition for juvenile myoclonic epilepsy which starts in childhood or adolescence.

So I take medication everyday and I will for the rest of my life.  There are certain things that trigger my seizures- poor diet, stress, and lack of sleep., as well as flashing lights in video games, movies, fireworks, concerts or anything that has any type of flicker.  I very rarely go to see a movie in a theatre unless it’s a low key drama with mostly dialogue. I try and stay away from these as much as possible, but I’m taking a chance when I see Taylor Swift with my daughters this summer.  I’ll be the mom in the cool shades, and quite possibly the mom with her eye’s closed.

Back to our little man…

There have been people that have asked why our son isn’t sleeping since he was put on medication.  I mean, surely that would work, right?  I guess I can compare it to a medication that either you or I take.  I know with my epilepsy, it took quite awhile to find a medication and dose that worked, and even now it needs to be adjusted from time to time.  There are some nights (very few) that he sleeps through the night.  Then the next night he is awake for the majority.  We just roll the dice each night after giving him his medication, smile and say, “Well, maybe we will get some sleep tonight”.

*And here’s to hoping you all have a good night’s sleep 😉

Thanks for reading.  Until next time..

.