Raising early intervention and autism awareness through our amazing journey

Archive for May, 2015

We have laws. Obey them.

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!


Progress is being made!

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

The reason why I’m fighting..#1 of many to come

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.