Raising early intervention and autism awareness through our amazing journey

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!


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