This is a long post as the hearing was three hours and the only media coverage came from the Clarion-Ledger, and the goal is to provide you, the gentle reader, with the facts of what took place at the hearing.
Highlights:
-Testimony by Medicaid and HSM
-Testimony by Mary Troupe of Coalition for Citizens with Disabilities
-Testimony by Dr. Susan Buttross of UMC
-Testimony by parents of Down Syndrome children about Medicaid & HSM
-Materials distributed to the committee
Medicaid Testimony
A very contentious hearing took place at the legislature on November 4. Representative Steve Holland and a joint committee of Medicaid and Public Health conducted a hearing on Medicaid's treatment of children suffering from Down's syndrome. Representative Holland said he called the hearing because the state "was kicking Down's Syndrome kids off of Medicaid."* The hearing opened with Medicaid Counsel Richard Roberson testifying on behalf of the state. Mr. Roberson was backed by a battery of officials and watchpups from Medicaid and Healthsystems of Mississippi (HSM). Executive Director Bob Robinson did not attend the hearing. Mr. Roberson said Medicaid was not denying coverage per se to Downs Syndrome children or children who receive care at home but was following federal law for the Katie Becket Program (See document posted below). The law states the following criteria must be met in order to qualify for the program:
"(a) The agency may provide Medicaid to children 18 years of age or younger who qualify under section 1614(a) of the Act, who would be eligible for Medicaid if they were in a medical institution, and who are receiving, while living at home, medical care that would be provided in a medical institution.
(b) If the agency elects the option provided by paragraph (a) of this section, it must determine, in each case, that the following conditions are met:
(1) The child requires the level of care provided in a hospital, SNF, or ICF.
(2) It is appropriate to provide that level of care outside such an institution.
(3) The estimated Medicaid cost of care outside an institution is no higher than the estimated Medicaid cost of appropriate institutional care.
(c) The agency must specify in its State plan the method by which it determines the cost-effectiveness of caring for disabled children at home." 42 CFR 435.225
Mr. Roberson testified the number of disabled children" covered by Medicaid while living at home instead of an institution increased from 732 in 2003 to 1,196 in 2010. The attorney stated the "frustration most folks have had is caused by institutional determination" and the Division is working with HSM to "streamline the forms".
HSM's role in this controversy is one of approving medical services. Medicaid approves a child's eligibility for coverage. HSM is a private, non-profit Louisiana company that has a contract with the Division to approve or specify what medical services a child may receive.
Mr. Holland asked why federal law was being observed "more tightly than its ever been" in the program and stated more than a few times that the program had worked fine for "over ten years without a problem" and suddenly kids were being pushed off the Medicaid rolls. Mr. Roberson said the Division was merely following the law although the Division was "screwing the lid a little more tightly" in determining eligibility for the Katie Becket program. Mr. Roberson also said the Centers for Medicare and Medicaid Services (CMS), a federal agency, had made inquiries and "asked questions" into how the Division was operating the program.
Representative John Mayo took over the questioning at this point and asked Mr. Roberson "who wants to cut off 1200 kids?" Mr. Mayo also stated "Mississippi Medicaid is threatening to audit any provider who spoke out until they went out of business." Mr. Roberson said it was not true and he would "love to know who it was that said that." Mr. Mayor replied it was more than once source (This correspondent can state it has happened. One provider here in Jackson tried to take the lead in protesting some Medicaid decisions and was promptly rewarded with an audit. The provider got the message and has been very quiet ever since. This correspondent can also state there was a lobbying effort made a couple of years ago to have people call Medicaid to protest some policies. A frantic call was made in the early afternoon that day telling everyone to stop lobbying after the Division threatened to audit everyone involved and made it clear it was dead serious. One can imagine Mr. Roberson would indeed love to know who informed the Representative about these tactics. OK, that was an editorial comment- KF).
Mr. Roberson said the child did have some options available to him if HSM or Medicaid denied coverage. He claimed the child could appeal the decision and if he lost the appeal, he stated the child could get a lawyer. When pressed as to how the family could pay for a lawyer when the family was probably in dire financial straits, he said they could hire a lawyer "on contingency". The lawyers on the panel promptly educated him how there was literally no money in a Medicaid case as the demand was for services, not damages.
The panel then grilled Mr. Roberson over the process a family faced in trying to obtain coverage for disabled children under Katie Becket. Mr. Roberson testified the process was composed of the following steps: 1) A hearing held by the staff of Medicaid. 2) First level review by a nurse 3) HSM physician review 4) Second physician review by a UMC doctor. Representative Hillman pointed out the doctors used were paid by Medicaid and not independent. Mr. Roberson replied there was "absolutely no bias" and the patient "could get his own doctor".
After Mr. Roberson explained the refined appeals process utilized by the Division, Representative Cecil Brown asked Phyllis Williams if at any point in the appeals process, anyone actually examined the child or "just records only". The Doctor replied the only time the child was actually seen by anyone was by the primary physician and conceded only files were examined. Mr. Roberson chirped "everyone is given an opportunity to tell us about the child's needs." Mr. Mayo argued "he didn't understand how two doctors who never saw the child could overrule the child's doctor."
The panel then questioned Dr. Judy Phillips, the Medical Director for HSM. However, Dr. Phillips repeatedly said throughout the hearing she has been associated with HSM for only six weeks. One can only wonder why HSM sent up a "Medical Director" who had no real knowledge of HSM's procedures or history to field questions from those responsible for its funding.
Representative Holland curtly told those testifying before him he would look at the appeals process "come January 4" and that it was "paper shufflers doing a process that should be a medical review." Mr. Holland asked the Medicaid attorney how the Division defined a "level of institutionalized care". Mr. Roberson replied "there were different definitions."
Testimony of Coalition for Citizens with Disabilities
The hearing then moved to the testimony of several witnesses after Medicaid and HSM were excused from the hot seat. First up was Mary Troupe of the Coalition for Citizens with Disabilities. She excuded a forceful but happy presence as she testified- These children are not on SSI and do not receive SSI checks. The disabled children enroll in SSI simply to receive the disabled designation to qualify for Medicaid.
- Many parents need the program because although they may have private insurance, private insurance often does not cover therapy services for disabled children or has severe limits
- CMS told her the federal government did not change its policies
- The repeated complaint among parents disqualified by HSM/Medicaid was they were not given enough information as to why coverage was denied.
- No hearing officer ever held a hearing in person but instead, all hearings are conducted over the phone. Numerous parents testified later about the short and abrasive nature of the hearings.
- The Division does not try to obtain to obtain available extra matching funds.
Testimony of Dr. Susan Buttross
Dr. Susan Buttross, UMC Physician and an expert on Autism, provided written testimony (embedded below on page 2 and very educational) and said:- "we understand cost containment"
- "I believe as do the other 300 pediatricians in our state that children with Down Syndrome are not the group of children who should be struggling to qualifiy for the Katie Beckett/Disabled child living at home Medicaid waiver."
- Dr. Buttrross discussed "Matt", a Down Syndrome child, who was enrolled in an early intervention program. The mother has private insurance but it only pays some of the medical costs. In order for the child to reach his maximum potential and cost the state less money down the road, it is imperative Matt receives treatment while a young child as the life span has grown from 25 years in 2983 to 49 in 1997. The rate of development progress slows with age. Thirty years ago children with Down Syndrome were not kept at home but in full-time facilities.
- There are no facilities in Mississippi for children under the age of five years old suffering from Down Syndrome.
- Down Syndrome is diagnosed by a test and is not an opinion. Either the child has it or he doesn't have it.
- Matt was denied coverage by Medicaid. The Division did not say he was denied or what information was missing from his file. Mayo asked if there was a checklist provided to health care providers or patients. Dr. Buttross replied "no".
- Dr. Phillips of HSM had no comment.
Testimony of Parents
While the witnesses testified, witnesses who were parents of Down Syndrome children, Representative Flaggs spoke on a cellphone while sitting directly five feet in front of them in an utter show of disrespect. It should be pointed out all but one of the witnesses were white. They came from different backgrounds. Some were married, some were single parents, all showed great anguish as they testified the ordeals they went through in dealing with Medicaid and HSM. There were no stereotypes as they were all just parents who were trying to do what was best for their children suffering from Down Syndrome and other conditions.The common theme presented by all of the witnesses is Medicaid has no checklists, offers no standards used to qualify children for coverage, horrible treatment by HSM and Medicaid employees, hearings only held over the telephone. Rarely, if ever, did Medicaid actually allow a hearing to take place at its offices. The children are never actually seen by Medicaid or HSM yet their bureaucrats determine their child's future. Through it all, Medicaid and HSM representatives rarely said anything. Dr. Williams' standard response was she had only been at HSM for six weeks. Here are the highlights of the parents testimony.
Christina, the parent of a child with spina bifida, testified:
- "I was told my child was disabled even though he couldn't walk"
- The appeals process is the problem.
- Her child had to go to the Shriner's in Louisiana because Medicaid would not pay.
- she was the parent of a nine-year old child with a nine-month old brain. She looked at the Medicaid watchpups and said "Is that disabled enough for you"?
- "I work, I'm not someone who sits around." She then testified how her child's condition and care for her child has reduced her to poverty. Ms. Houston is a Certified Nursing Assistant.
- she had "never heard her child say mama" and her child was denied for speech therapy.
- she had sat on hold for three hours trying to get asthma medications approved.
- she once again looked at the Medicaid and HSM personnel and said "you should look at these kids face to face." She further testified her child is currently not covered by Medicaid.
- Her child suffered from a brain injury caused by a wreck.
- The child's condition worsened because Medicaid "dragged so long". Treatment and therapy of such a condition must begin as soon as possible to improve her chances and to prevent the detioration that did occur.
- she wants someone from Medicaid to actually "look at her daughter".
- He has a 14-month old daughter with Down Syndrome.
- Medicaid called one day, said it was "a hearing" and then informed them they were denied. (These are just words I am writing. There is no way I can convey the anguish Mr. Edmondson felt as he became choked up several times while testifying.)
- His wife went to all fifteen doctors and got paperwork from every one of them to submit to Medicaid. Medicaid said no information submitted after a certain date would be considered.
- Hearing officer said she would approve the child for services, same hearing officer instead sent them a denial letter.
- "Medicaid doesn't tell us information they are looking for, they just tell us to send whatever we can and they will deny us anyway."
- Representative Mayo asked Mr. Edmondson if Medicaid told him "specifically why his child did not qualify". He told the legislator he was only told "she did not meet the standard of care". Rep. Mayo then asked Mr. Roberson "what criteria was used". Mr. Roberson meekly said "the case is under litigation" and he could make no comment. Rep. Mayo asked several times how two doctors who never saw the child could overrule the child's fifteen doctors.
- Representative Holland then said "I'm totally disgusted and Medicaid has no pediatric standards. He then said Dr. Robinson and Governor Barbour "don't care".
- she has a six-year old child with Down Syndrome. She spend the last year trying to get her child recertified with Medicaid only to be denied. Many parents complained about the so-called re-certification process where Medicaid requires the parents each year to re-certify the child's condition and need for services provided by Medicaid.
- her caseworker told her "her supervisor told her to take people like jack off of the walls."
- Rep. Holland interjected that the state only has to pay 15.5 cents for a dollar worth of services.
- her child is four years old and suffers from Down Syndrom
- Medicaid said she was not "disabled enough" and that she has had therapy since six years old. She can't eat, dress, or toilet train but because she can walk, she is not considered disabled by Medicaid standards.
- she had a Master's in rehab counseling but "Medicaid was trying to confuse her" with all the gobbledygook (my word) during a hearing that was held over the phone.
- Colby is eight years old and suffers from Down Syndrome.
- "I'm a conservative but I'm not happy with Haley". One Democrat on the committee said "The minority party would love to receive you."
- Medicaid wants a recertification of Down Syndrome every year.
- "applying to Medicaid is a complete and utter nightmare. We've been lied to, papers have been lost. One caseworker said uh-huh, what do you need?"
*Legislators in attendance: Holland, Mayo, Flaggs, Robert Johnson, Dedeaux, Bryan, Cecil Brown, Hobson, Bob Evans, Currie, Ellis, Broomfield, Duvall, Hillman. Medicaid and HSM employees: Richard Roberson, Dr. Phyllis Williams, Betty Williams, Becky Rau, Judy Phillips (HSM Medical Director)
10 comments:
Mayo is a full-throated proponent of Obamacare yet he complains:
The Doctor replied the only time the child was actually seen by anyone was by the primary physician and conceded only files were examined. Mr. Roberson chirped "everyone is given an opportunity to tell us about the child's needs." Mr. Mayo argued "he didn't understand how two doctors who never saw the child could overrule the child's doctor."
Earth to Mayo, Earth to Mayo. You haven't seen nothing yet.
I have always believed the people that need help do not get it but the people who do not need help get it. The people who need it have no fight in them because they fight each day of their life that is why they are there for help. But the people who do not need it are sitting at home watching cable tv and driving their partners Lexus and have all the time in the world to fight and all the strength too and finally the officials give in to them i.e. they know how to work the system!!!!!!!!!!!!
"It should be pointed out all but one of the witnesses were white."
Why?
Unless there is an undercurrent of racism on the part of black medicaid employees treating white applicants like dirt. Is that the subtext here?
Good point. Because when I go to other websites and Medicaid comes up, the usual stereotypes are thrown out- its all freeloaders, people who don't want to work, minorities, etc etc and I wanted to dispel those myths and stereotypes.
Kingfish, maybe no one wants to say this, but I call this compassionate reporting. Kudos to you sir.
In a state overloaded with freeloading deadbeats collecting a monthly "sittin' at home check" it is scandalous that these people, the very patients this program was designed to help, get treated like this. I posted last week on another thread about how Medicaid officials are arrogant and will not cooperate with the State Health Dept. by providing numbers the DOH needs to perform its legislatively-mandated mission.
A few specific items from this massive report for KF:
1)"Christina, the parent of a child with spina bifida, testified:
• "I was told my child was disabled even though he couldn't walk""
I believe the word "not" should be there before "disabled".
2) "Another parent (did not get her name) testified
• her child is four years old and suffers from Down Syndrom
• Medicaid said she was not "disabled enough" and that she has had therapy since six years old. "
The ages don't make sense here.
3) I think some of the parents are confusing the mandatory recertification of Medicaid eligibility with a medical recertification. The physician's documentation gives the option to list a disability as "permanent" or "lifelong duration", so I don't know why it would need to be updated annually. Down syndrome never goes away, and even the morons at Medicaid should know that.
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Political forecast: If I was planning to run for President, I'd hate for my opponents to be able to say 1) my administration balanced the budget by taking medical care away from crippled children and 2) the only 5 convists I pardoned during my years in office were all murderers who killed their wives.
7:48, as to your point (3), Medicaid takes the position that Down syndrome itself is not a disability and the parent must provide evidence on re-certification each year that Down syndrome continues to create some disability in the child. Thus, parents are required to provide a psychological evaluation each year (at their own expense) that establishes their child continues to have mental impairment as a result of Down syndrome. As we all know, no one has ever been cured of Down syndrome, nor is there a single human on this earth with Down syndrome who does not suffer from mental impairment. Can you now understand the total stupidity of this????
I am a parent of a child with Down syndrome and it would break your heart to hear the difficulties some families face. These are people who have jobs, pay taxes, take care of their families and love their children very much. But, let's face it, no matter how much you love your child and want to do everything you can for her, not many working families can afford a $2,000 therapy bill per month out of their pocket. And that is the reality here, because most insurance policies provide only a very limited amount of therapy coverage that normally runs out by March of each year.
Without therapy during the early years, our kids will require a level of care in later life that most certainly will cost many taxpayer dollars. All we want is the services we need now while they can have the greatest impact for our children, so we can help our kids be as independent as possible later in life. I don't want the government to take care of my child forever, but if I need help with the therapy that will enable her to be as independent as possible so I don't have to depend on a government program later, then give me that help. Now.
Down's Syndrome , Cancer or Grandma's Broke Hip, ...It makes no difference.
Healthcare rationing has arrived before we expected it.
Now Steve Holland , Chairmen of the Lolly Pop Guild, yes... the Lolly Pop Guild, .. and distinguished .. Representative... from the Land of Oz...
has an issue with health care rationing ???
I don't know why, He'll make money off of all of em' before, during, and after.
The child requires the level of care provided in a hospital, SNF, or ICF.
The problem here is the standard as much as the agency. Say your kid needs, oh, 5-10 hours of therapy a week. Your private insurance is going to run out pretty quick on that. But is that a nursing-home level of care? Who says? The people trying to cut the Medicaid rolls?
And of course there's one other problem. TAXES. We have been cutting Medicaid for years. Sure there's some waste to be trimmed, there always is, but don't kid yourself about the savings.
It is not mature or decent to begin one's budgetary deliberations, as Barbour does, with the premise that taxes shall not rise. Figure out what you NEED and then figure out how to pay for it.
My aunt became legally blind and worked making brooms after her disability became worse. She could not quality for Medicaid because she made $10 to much making brooms. She had a college degree but had to resort to doing what ever she could to exist. If they find the right attorney they usually end up getting SSI disability, then Medicaid.
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