Raising early intervention and autism awareness through our amazing journey

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.)


Read the rest of this entry »

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.

Read the rest of this entry »

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..


I tried to warn them.  Not in a threatening way, of course, but in a realistic and obvious warning.  It wasn’t  so much of a “just try and see what I will do” kind of warning, but rather a “are you seriously foolish enough to dare and play with the law” type of warning.  I can say that if I were thinking that running a red light only got  people ages 16-25 in trouble and someone warned me that at 36 I could still be charged, I might just decide to trust that person since the risk would outweigh the benefit.

“You can’t legally deny him?!”..

 is what I stated to FOUR different people last week after we received the denial letter during what seemed to be one hundred phone calls:  one to the social worker on the screening team, the second was to her supervisor, then to the nurse on the screening team, and then to the nurse’s supervisor.  They ALL assured me that many superiors, including the head physician of the County Health Department, have reviewed our son’s case.

I seriously hung my mouth in disbelief during each phone call.  They stated that they have to follow “very strict guidelines” given by the Department of Medical Assistance Services (DMAS).  I had a few of those “am I crazy?” second-guesses in both my education and sanity.  Did all of my professors lie to me?  No, they couldn’t have!  I mean, I’m not an attorney, but I have a degree in Paralegal Studies, and I’d like to think I didn’t just warm up a seat in my classes.  Then I thought, well I’m not crazy and I did learn a bit (my professors who were retired attorneys might be just a tad offended if I didn’t) so maybe this is one of those odd cases where the State gives the contracted party the right to interpret the law.  Yep, that had to be it.  And what were those guidelines anyway?

I had asked the social worker to provide the codes for me, and she did; three federal and three state.  There had to be more to the situation other than the six codes that I KNEW I was interpreting correctly.  I mean, these were the only codes that they use to make the decision of eligibility?!  If these six codes were truly the only codes they use, then there is not room at all for further interpretation other than what it states; you can’t add or take away from the wording in state and federal law if it is clearly stated.  The only exception that I am aware of (or one of the few), is if it states something like “or other related conditions” in which you could argue a related condition that is applicable to your case.  I mean, I learned that didn’t I? Then what surely has happened is that DMAS has given the Department of Social Services (DSS), the party contracted to assess eligibility for the medicaid waiver, the right to interpret the law however they want.

After all of the top people I spoke with couldn’t provide helpful information, the next step was to call DMAS myself and find out if they gave DSS the authority to interpret Medicaid Law.  I surely didn’t want to sound dumb when speaking with DSS and tell them they were wrong.  After many phone transfers, I FINALLY talked with someone who could answer my question.

“No ma’am, they must follow state and federal law just as we do” he said.
Say what?  So I asked again, this time using different wording.  Still got the same answer.  My next thought was “Okay, I’m not crazy, and DMAS has to know what they are talking about.”  Once again DSS and the health department must not know what they are doing?!  I knew it, but I seriously thought they could not afford to make this big of a mistake.  This is AFTER I told them that according to the six codes that THEY provided to me, they could not legally deny him.  And the only answer I got was a rude, self righteous answer of, “Well, Mrs. ____, if you feel that you have been treated inappropriately and you have been wronged, then you can appeal”.  Whoa, do they have any idea that they are CLEARLY breaking the law?!  Wow, this is serious!

My next call was back to DSS to inform them that I contacted a top representative of the “long term services” division of DMAS who explained to me that the contracted screener (DSS) must follow state and federal law as the code states.  The nurse sounded surprised that DMAS would say such a thing since “DMAS has specific guidelines that DSS must follow”.  I explained to her that whatever DMAS’s “guidelines” state, they must follow state and federal law since the law takes precedence over a division guideline.  I also informed her DMAS’s website even states that fact.  I read to her the declaration that was issued which clearly states that the law overrides the guidelines:

“These Manuals are not exhaustive of Medicaid law and should not be relied upon as a legal authority. The provider should always rely on its own counsel to ensure compliance with the Medicaid laws.”

After reading this statement to her, she replied with something that made me realize that these people had no desire at all to make things right.  They clearly messed up and were trying to cover their butts.  They would rather stick to their grounds just the same as they stuck to their guidelines; nothing at all holding it up.  When I asked many times why they didn’t follow Virginia Code 12VAC-30-60-312, they could not provide any explanation.  I will underline the wording pertaining to the legitimate documentation that we presented during the screening.  It reads as follows.

12VAC30-60-312. Evaluation to determine eligibility for Medicaid payment of nursing facility or home and community-based care services.

A. The screening team shall not authorize Medicaid-funded nursing facility services for any individual who does not meet nursing facility criteria. Once the nursing home preadmission screening team has determined whether or not an individual meets the nursing facility criteria, the screening team must determine the most appropriate and cost-effective means of meeting the needs of the individual. The screening team must document a complete assessment of all the resources available for that individual in the community (i.e., the immediate family, other relatives, other community resources and other services in the continuum of long-term care which are less intensive than nursing facility level-of-care services). The screening team shall be responsible for preauthorizing Medicaid-funded long-term care according to the needs of each individual and the support required to meet those needs. The screening team shall authorize Medicaid-funded nursing facility care for an individual who meets the nursing facility criteria only when services in the community are either not a feasible alternative or the individual or the individual’s representative rejects the screening team’s plan for community services. The screening team must document that the option of community-based alternatives has been explained, the reason community-based services were not chosen, and have this document signed by the client or client’s primary caregivers.

B. The screening team shall authorize community-based waiver services only for an individual who meets the nursing facility criteria and is at risk of nursing home placement without waiver services. Waiver services are offered to such an individual as an alternative to avoid nursing facility admission pursuant to 42 CFR 441.302 (c)(1).

C. Federal regulations which govern Medicaid-funded home and community-based services require that services only be offered to individuals who would otherwise require institutional placement in the absence of home- and community-based services. The determination that an individual would otherwise require placement in a nursing facility is based upon a finding that the individual’s current condition and available support are insufficient to enable the individual to remain in the home and thus the individual is at risk of institutionalization if community-based care is not authorized. The determination of the individual’s risk of nursing facility placement shall be documented either on the state-designated pre-admission screening assessment or in a separate attachment for every individual authorized to receive community-based waiver services. To authorize community-based waiver services, the screening team must document that the individual is at risk of nursing facility placement by finding that one of the following conditions is met:

1. Application for the individual to a nursing facility has been made and accepted;

2. The individual has been cared for in the home prior to the assessment and evidence is available demonstrating a deterioration in the individual’s health care condition or a change in available support preventing former care arrangements from meeting the individual’s need. Examples of such evidence may be, but shall not necessarily be limited to:

a. Recent hospitalizations;

b. Attending physician documentation; or

c. Reported findings from medical or social service agencies.

3. There has been no change in condition or available support but evidence is available that demonstrates the individual’s functional, medical and nursing needs are not being met. Examples of such evidence may be, but shall not necessarily be limited to:

a. Recent hospitalizations;

b. Attending physician documentation; or

c. Reported findings from medical or social service agencies.

Statutory Authority

§ 32.1-325 of the Code of Virginia.

Historical Notes

Derived from Virginia Register Volume 18, Issue 18, eff. June 20, 2002.

To clarify; to receive this waiver, the person must meet the following three criteria:

1.  Assistance in daily living (he HAS met this requirement per DSS screening)

2.  Must have medical and nursing need (he HAS met this requirement per DSS screening)

3.  Must be at imminent risk of nursing facility placement  (he does not meet this per DSS screening)

(There is NO other criteria to meet after meeting the first two other than “imminent risk” in which we provided documentation.)

If you look above to the Virginia Code, you can see the underlined portion that qualifies him to receive services.  His physician wrote a letter stating his needs, diagnosis’, and that his needs are not being met without community based services.  This same type of letter was written by his therapist who is certified by the Virginia Board of Medicine.  Additionally, he has been cared for in the home prior to assessment (his 10 in-home hours of therapy are no longer available due to a loss of Medicaid eligibility) and there has been a change in available support preventing former care arrangements from meeting his needs.  Also above, you can read in the code that there only has to be ONE of these met.  Our son meets THREE of these.  Not only does he meet three, but the screening team was given documentation proving this.

Given that information, you can easily see why this is a case of the law not being followed.

I have contacted a disabilities attorney. We have made arrangements to speak about my son’s case on Monday.  I have also been communicating with the Attorney General’s Office and am going through the process of explaining the entire situation (which will take a while).  We are filing our appeal on Monday, which will give me ample opportunity to expose all that took place- from the phone call when we asked to open our son’s case to the denial itself.  The whole experience from the start has been nothing but discriminating.

As I have stated before, this is not a unique situation.  This has happened, and has been happening for years, to so many parents/caregivers of individuals with Autism.  I’m not exactly sure why it hasn’t been addressed fully. Based on what we have heard from various leaders in advocacy groups and autism societies, it seems as though people believe that DSS can get away with handling screenings in this way.  I can assure you that the screeners are in no way following the laws which were provided to me by DSS (after I asked for them).

I will continue to make calls daily.  I will continue to be annoying.  That’s the only way that I know how to get answers and have someone actually listen.  I want them to know that I am not going away and will pursue this until it is changed.

I would love to hear stories of this type of situation so I can share those with the disability attorney and the Attorney General, so please spread the word and share your story!

Below is the letter that we sent today, 05.26.15, to DSS and the health department. We attached a few documents to the letter. The denial letter has already been posted in a previous post, as well as our list of concerns my husband and I constructed before we received the denial letter.
As I have stated before, this exact situation has happened many times in the past, however no one knows how to prove them wrong. I have reached out to five of my friends who are attorneys. Not one of them knew of a for sure attorney that handles these cases. Two main reasons-
1. Most want attorneys to represent pro bono given that income is an issue.
2. The risk outweighs the benefits in representing a big case that has the potential of falling through. No professional wants to risk having their reputation blown when they have to earn money to support their family. I don’t blame them.

I have however been directed to contact the Attorney General’s office, which I have. I will continue to contact them daily until I reach someone who will listen. Since it’s regarding an agency not following state and federal law, then the state will have to be the ones to hold them accountable.

As I’ve stated before, I am not doing this because I feel I have been “wronged” or that I want to win a case. I am perusing this because the special needs community needs to be heard. This case will represent ALL prior wrongful screenings and denials not just for the parents but for All special needs children. These children don’t have a voice but we do! The screening agencies have discriminated against innocent special needs children, saying the EDCD waiver is for the elderly- another lie. But more than discrimination, they have made a mockery of the law that has already been set?! I’m not fighting that a right may potentially have been broken, I am fighting because the law HAS been broken! I will not stop. Please continue to read the letter below. This is only a small fraction of the letters, calls, emails, etc. that we have done in the last week.

Donna _____,

I’d like to take an opportunity to follow-up with ______’s case. Here is a breakdown of what has occurred since his screening (please note that I will be attaching documents provided during the screening for your reference):

We received a phone call from Jennifer _____, a few days after our son’s screening. She apologized for statements made by Susan _______, during our screening – specifically that our son would not qualify for waiver services; “he was denied before and he will be denied again” Susan stated multiple times.
We received a phone call from Susan _____, to let us know that her insurance is through Blue Cross / Blue Shield and that she has coverage for ABA Therapy.
We provided the attached letter stating that we were concerned that our son would not receive a complete evaluation based on the events and statements of our screening.
We received the attached letter indicating denial of waiver services for our son.
We received a phone call from you where you let us know that you believed that our son’s screening was conducted appropriately. We indicated that we had a hard time believing this based on what had transpired to date. We also indicated that the letter of denial of services made statements that a change of avialable supports was not indicated and attending physician / medical professional documentation was not provided. We clearly indicated a change in available supports during our sons’s screening and provided the attached letters from our son’s attending physician and Board of Medicine certified BCBA. We requested further written explanation of the basis of our son’s denial in light of the provided documentation and have not yet received anything. We are owed this information should we need to proceed through the appeal process.
We have received subsequent phone calls from you where you have made further inquiries about Our son’s case and did acknowledge that Susan_____, should not have made a statement about our son not meeting the criteria for services during the screening prior to reviewing all documentation provided with the entire screening team. We also indicated that we believed that State and Federal Laws governing the pre-admission screening and approval/denial process were not followed in our son’s case. We asked if DSS had someone in their office making sure that the screenings are conducted to legal requirements and you indicated that there was someone in the city that DSS uses occasionally, but not recently.
Just for your reference:
You had stated during our phone conversation on 05.22.15 that the team bases their decision on the evaluation of need for a nursing facility, and that our son did not seem to meet the level of care that a nursing facility would provide. The partial code you read to me was of 42CFR441.302 which states “evaluation of need” is the assurance that the agency will provide for an initial evaluation. The evaluation was not completed.

To be specific, the sole purpose for denying our son was based on an excerpt taken from Virginia Code12VAC 30-60-312 stated in the denial letter. If you claim that the team conducted a complete evaluation, and more so that you reviewed the case yourself, as well as other superiors, then you would easily see that we provided the team with a physician letter (documentation attached) whom stated his needs are not being met. You would also see a letter from his therapist who is certified by the Virginia Board of Medicine (reported findings from medical) stating (among other things) that his needs are not being met, and also documentation provided during the screening of his “change in available support” as he has been “cared for in the home prior to the assessment”. This includes his ten in-home care hours that he was provided before the assessment and is offered no longer. The state code does not specify the type of care. To state that his care was “behavioral” as stated by Susan ______, would be adding to the state code in which no party is able to do. All of this information was provided to you during the screening, but the denial letter states (attached) that there has been no change in his available support system, and that there also is “no evidence available” demonstrating that his needs are not being met. The reason for the denial is false. Our son has been wrongfully denied. Not only was he wrongfully denied, but the screening team as well as those whom reviewed our son’s case have seemed to miss some very important information. This is extremely troublesome and we need answers as to why.

Please let us know when we may expect further information regarding the exact basis for our son’s denial along with the State and Federal Code support of the decision. You had stated you could provide us with this information by 05.22.15, but none has been received as of 05.26.15.

Thank you,

The _________’s

One of many reasons for fighting this waiver denial-

If our sons’ waiver denial is reversed without the need to appeal, they will be admitting that the screening was not adequately conducted, and they will also be admitting that he was wrongfully denied. I want to get help for my son, and I want to help others who have gone through the same or may go through the same in the future. I’m sure there will be others, as our screening and denial was not a unique case.

We wrote a 3 page letter to DSS and Department of Health BEFORE the denial was written. In the letter we addressed our concerns and the troubling comments and actions that were made during the screening that lead us to believe he would be denied. Our biggest argument? The screeners stated multiple times during the screening that “he will not get this waiver. He was denied before, and he will be denied again!”. By law, the team must be made up of 3 individuals to review ALL documentation; a nurse, a social worker, and a medical doctor. Only TWO were present to possibly review, which they did not, any documentation. (Three do not have to be present, however all must assess all documents and information). This means that by making those statements repeatedly, along with MANY other troubling actions, they predetermined that he was not going to get the waiver without following state law to fully assess all information.

Additionally, the information we provided to them is full evidence that he meets ALL criteria. But it gets worse.

In the denial letter it states that there was “no evidence” to find a change in available care, and no documentation of a physician’s findings were provided, and that that is the reason for denial. The denial letter was a complete LIE, as they WERE provide all of the information. There was a major change in care since we had in-home care (ten hours a week) and the care was/is gone because it was no longer available.

Additionally, our son’s physician AND therapist who is certified by the Va Board of Medicine, both wrote letters naming his THREE diagnosis’ and stating the fact that his level of care is not being met. By Virginia state law, he DOES meet the requirements and was given documentation during the screening as proof! This is also evidence that they did NOT follow the law that states there must be a complete evaluation.

It wasn’t until I pressed them for answers over multiple phone calls, that they began to realize that they really messed up. They have offered to have it looked at again (to cover their butt!). There is no way they can deny him after having a second, third, fourth, etc. look at the case without further breaking the law.

Even if he is found eligible (which he already legally does) I will not stop. Just because they find him to meet criteria does not excuse the fact that they wronged us, our son, and the law. We will take this further until it reaches the top, and still not stop. I am determined that this will not happen to another family!! There is so much to be done for our autism community as well as any and all special needs.

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..





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.




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!!