Death by Medicaid: Turning 21 can be a killer

Erik Sorensen died because he turned 21.

An accident in 2008 left him paralyzed from the neck down.  He was completely dependent for every movement, every bodily function, on the help of others.  He was enrolled in one of Hawaii's 1915(c) Medicaid waiver programs, and in February 2009 was transferred into the state's new 1115 Medicaid program operated by UnitedHealth and Wellcare.

In June, he turned 21.  Five months later Wellcare (Ohana in Hawaii) told him they were cutting his home health services by fifty-five percent, from 17 hours a day to less than 8 hours a day.

It took more than three hours for Erik's helpers to get him out of bed, into the bathroom, showered and dressed every morning.  Meals took an hour and a half each, and he couldn't be left alone since he was in constant danger of choking to death.  It took half an hour to get him into his wheelchair van (which he could not drive), and another half hour to get him out, with a total of four transfers per trip.  With only eight hours of services, it was going to be impossible for Erik to leave the house.  (A detailed description of a day in Erik's life can be found here.  It is very graphic.)

It also meant he would have to left at home alone for hours on end.  If he needed to cough, if his catheter bag needed to be emptied, if the spasms in his legs threw him onto the floor, if the house caught fire, he could die before anyone got home.

The cuts in services would take effect in less than two weeks.  Erik's case coordinator from Wellcare told him the insurance company wouldn't pay any more for his home services than it would cost them to put him in an institution.  That, the case coordinator said, cost only $6,000 a month, while his current services were costing the company $11,000. 

What had actually happened was that when Erik turned 21 he moved from have a disability code of AM15 (19-20 year old males) to the disability code of AM16 (21-39 year old males).  Under Hawaii's capitated rate agreement with Wellcare, the company was paid $11,840.27 a month for an AM15, but only got $5,398.71 for an AM16.  The level of services he had been receiving was costing Wellcare $10,431.20 a month.

In fact, Wellcare had a financial incentive to try to get Erik into an institution.  The capitated payment they would have received for him every month was not $6,000 but somewhere between $7,000 and $16,000 (island dependent).

I worked with Erik and his family, and while the appeal process was going on his services could not be cut.  Meanwhile, Erik was finally in a position to look forward.  He planned to attend a special program for quadriplegics on the mainland that was designed to enhance independence, he got his GED, and he signed up for classes at the local community college.

In Erik's eyes, all of that would be doomed if Ohana carried through on their threat of institutionalizing him.  In January 2010, Erik signed a formal declaration that was filed in Hawaii District Court, stating he felt coerced and threatened with institutionalization by Wellcare. When Erik later had a chance to get 24/7 service coverage (so he could be covered all night), he turned it down.  As his mom says, "we were both scared to death what Ohana would do" if they took the increased schedule.  The stress on Erik from the ordeal did not stop just because the appeal was over.

Sometime during the night of March 23, Erik vomited and breathed the acid liquid into his lungs.  Aspiration pneumonia set in immediately and his lungs became so filled with fluid the oxygen supply to his brain was severely reduced.  He died on March 25 from the complications of brain death.

There is no reason that the home care of a 21 year old individual should be half of what they were at age 20.  It is as if the system is saying that the life of a 21 year old is only worth half if what is was the day before their birthday.  It is a problem happening across the country, however, and what has become known as the "aging out [of EPSDT]" issue is being tested in the courts.  Decisions have been coming in supporting the ADA rights of the plaintiffs.

In Erik's case agaust Wellcare before the Hawaii State Insurance Commission, the February 25 decision criticized Wellcare for decision to cut medically necessary services that were "unreasonable from the standpoint of procedure and statutory compliance.

Respondent [Wellcare] made a coverage decision without undertaking the required statutory medical necessity analysis.  Respondent did not consider the recommendations of the Petitioner's treating physicians.  Respondent either did not know that Petitioner might have autonomic dysreflexia or disregarded information to that effect in contradiction to notes on a medical record.  Respondent relied heavily upon Home and Community Based Services Assessment Tool which has not been validated as a prevailing standard of care in the medical community.  Respondent did not have all relevant medical records at their disposal in making their decision.  This metholody does not indicate a high degree of diligence or care.

Diligence and care just means spending money.  The lower your cost to premium ratio, the more profit you get.  This is how capitated payment systems run by for-profit health insurance companies are diverting hundreds of millions of dollars in each state away from health services for people with disabilities and into the profit margins of the health insurance companies.  I've already written about the disproportionate profits Medicaid contracts are generating for the companies. Wellcare's recent abandonment of any program where they pay actual medical costs incurred implies it must be much more profitable to receive capitated payments.

The lives of children and adults with disabilities should not be put into the hands of companies that have such a financial inducement to base services on profits rather than medical necessity.

CDREA posts DOH and DHS decisions that benefit Hawaii's disability community

The Children's Disability Rights Education Association (CDREA) yesterday posted information from two Hawaii  appeals hearings that hold out potential benefits for thousands of the state's QExA 1115 Experimental Project participants.

Both decisions were in response to an appeal made on behalf of a Kauai child against a unilateral 15% cut in her home nursing decisions that was to have gone into effect on February 1.  The cut was instituted against all participants in Hawaii's Developmental Disability 1915(c) Medicaid waiver program, regardless of need.

The written decision by the Hawaii Department of Health hearings officer may open the door for all services that were cut to be reinstated immediately.  The "informational note" by the state Department of Human Services" acknowledges the responsibility of the 1115 Experimental Program (QExA) to pay for assistive and augmentative communications devices.

UnitedHealth Group and WellCare Health, owners of the two for-profit health insurance companies providing all the Medicaid QExA services, have begun a new round of drastic cuts.

The cuts are severe enough to appear to violate Hawaii's contract with the federal Medicaid regulatory agency.  Yet the feds are doing nothing to stop this.

Please, if you're the parent of a kid with special needs, read this

For the first time in my history as the mom of a kid with disabilities, we parents have the ability to get our kids all the home and school support services, technology and therapies that their doctors think are medically necessary. We can go straight to the source, rather than wait around for our local Department of Education or Voc Rehab to get their paperwork together. All you need is a prescription, the evaluation and a letter of necessity, and you turn it over to your Medicaid case worker. Better yet, some of the corporations such as Dynavox, handle all the paperwork for you. The timing is perfect. The government has dumped over $28 billion into state coffers that can only be spent on Medicaid, with more on the way. Schools have been given more money as well, with a particular emphasis being given to using it on assistive and augmentative technology. The percentage of a state's total Medicaid budget which will actually come out of state accounts is somewhere between 10-35%. I did a rough calculation, and for a state paying the highest percentage, for every $10 million of its own money the state does NOT spend, the state loses about $28 million in immediate jobs and services. The only problem is, in too many states, nobody knows what happens to those stimulus bucks once they disappear into some new, very deep coffers. If your state is continuing to cut medicaid services for your child, if your school is trying to cut service hours from the IEP, then there's a good chance there are some questions about how your stimulus tax dollars are being spent (and even if they are at all). Last week, the Government Accounting Office issued a report focusing on how states are using their stimulus funds. The report called into question the "quality and reliability" of data that the states are giving the feds about how and on what they're spending their stimulus bucks. Meanwhile, Department of Health and Human Services Kathleen Sebelius released an additional $600 in stimulus funds to the states just between September 17 and 30, 2009. Nobody in the media, nobody in the government, is paying attention to the mystery of how states are spending their stimulus dollars. CMS refers all calls on the subject to its Baltimore headquarters. Three states are under some sort of federal investigation for violating federal Medicaid law and the Americans with Disabilities Act, and 7 more have civil suits filed or in preparation alleging similar violations. A friend of mine with disability law experience and I have put together a group called Children's Disability Rights Education Association. Our role is to help parents and caregivers take greater control over their child's health and education. As CDREA we have a petition up, calling on DHHS to require complete accountability from the states, and to ensure priority is given to restoring Medicaid service budget cuts made since July 1, 2008. These cuts have unfairly targeted children as well as adults with disabilities who need skilled care to live at home with their families. Similar problems are plaguing state stimulus funding received for education. I just found this source, but the correlation between what's happening with money for both special education and medicaid home support systems is an atrocious example of discrimination against children, as well as adults, with disabilities. Please consider signing our petition, and forwarding it to your friends.

Feds Investigate Hawaii Medicaid Cuts -- News for disability rights advocates

Hawaii's Medicaid program has come under federal scrutiny by one Federal department, and is pending scrutiny by another. The severe budget cuts that Hawaii has been making in its DDMR waiver program, and the way Medicaid is functioning under the new managed care (for profit) system that began February 1, are the objects of this scrutiny. On June 29, I filed a complaint with the Office for Civil Rights of the Department of Health and Human Services (OCR). On August 26, the San Francisco regional office of OCR notified the San Francisco regional office of the Centers for Medicare and Medicaid Services (CMS) of the issues involved. A lot of health and other professionals are relatively unaware of the hugely important role CMS plays in the day to day operation of our state Medicaid and Medicare programs. CMS wrote the last formal interpretation of the Maintenance of Effort (MOE) clause of the American Recovery Act which allowed the states to get away with making substantial medicaid service cuts and still receive stimulus funds. CMS decides how Medicaid and Medicare are supposed to function and issues letters to the states or rulings printed in the Federal Register, and then these items become law for states to follow. CMS isn't set up to handle individual complaints, but is now watching how the Hawaii Medicaid due process system functions, to ensure it functions the way CMS expects it to. As the parent of a child whose home services have been threatened with substantial cuts, I have the security of knowing that the state will have to follow federal law in these hearings. They're not going to be able to just "make it up as they go", as has happened so often in the past. Part of this process is ensuring that EPSDT, which entitles children with special health care needs to a much broader scope of services than normally provided under Medicaid, also functions as intended. From the standpoint of education advocates, this can provide a tremendous opportunity. DHHS has written manuals on how EPSDT and IDEA are supposed to function jointly to meet all the educational, medical and social needs of children with disabilities. They published a brochure in May 2003 with detailed instructions on how state education departments can bill EPSDT for services, and another brochure in 2004 specifically describing how EPSDT services are to be incorporated into the IEP.

Medicaid eligible children with disabilities are entitled to receive medical services in the school setting, paid for by Medicaid, if two important requirements are satisfied. First, the school/school district must be a participating Medicaid provider. Second, the services must be written into the child’s IEP/IFSP, which automatically makes them considered medically necessary.

Since the Hawaii schools are Medicaid providers, there is no reason for Hawaii's children who are eligible for Medicaid to continue to suffer from DOE denials of services. This issue of the integration of EPSDT with the IEPs will continue under federal scrutiny. Doctors can write letters of medical necessity and submit these, along with a prescription, to the child's Medicaid provider (either Evercare or Ohana). Medicaid is then supposed to provide it via the funding they are receiving from the state. That part of the system isn't functioning well right now - but that's how we can all help get things working correctly here. Linda Nuland-Ames and I have formed the Children's Disability Rights Education Association. Our first activity is an online petition to DHHS Secretary Kathleen Sebelius, calling for full transparency of how states are spending their Medicaid stimulus funds and ensuring that a priority is given to using these funds to replace Medicaid services which have been cut since July 1, 2008. According to DHHS, the states have already received over $28 billion in stimulus funds that can ONLY be spent on Medicaid. My state, Hawaii, has already received over $131 million (with more on the way). No one seems to know how it is being spent, and no one wants to answer my question why it isn't being spent restoring Medicaid service cuts. CMS tells me they are also working to have someone made responsible at the state level for communicating between families that have their services cut, and both the Hawaii Department of Health and Department of Human Services. CDREA will reach out to families whose services have been cut to ensure their concerns are heard and receive the consideration they so urgently deserve. Please join us in these actions. Summer Harrison Linda Nuland-Ames Children's Disability Rights Education Association

Why cutting state Medicaid budgets is a terrible economic decision

In 2003, the national office of ARC published an article focusing on the economic impact of cutting the state Medicaid budget. Considering the number of states currently attempting to do the same thing, the article's explanation of the mathematics of cutting state Medicaid budgets is extremely timely. The basic logic is that for every dollar of state spending cut, the state loses at least $1 in federal funding. It's because the federal government matches state medicaid spending, by percentages ranging from 53% to more than 80%. (The acronym for the federal matching funds percentage is FMAP). So in 2003, in Hawaii, for every dollar the state spent on Medicaid, it received $1.43 from the Federal government. This sums it all up:

In 2001, Hawaii spent $308 million of state dollars and $455.8 million federal dollars on Medicaid. This resulted in $743 million in new business activity in the state leading to the creation of more than 7,000 new jobs. Every $10 million cut in Hawaii’s state share of Medicaid spending could lead to a loss of $29 million in state business activity, resulting in 286 jobs lost in the state. Source: Families USA, Medicaid: Good Medicine for State Economies; January 16, 2003.

This could be summed up as the "cut off your nose to spite your face" approach to economics. What it also means is that for every $10 million the state (in this case Hawaii) cuts from it's Medicaid budget, the community of individuals with disabilities and special health care needs actually loses $2.43 million worth of services. The states forget to tell us that when they are going on and on about how they have to make the cuts someplace and we all need to just take it on the chin, or grin and bear it, or whatever platitude you're hearing from your state officials. The federal Stimulus bill enacted by Congress on February 17 of this year added $86.6 billion to the FMAP for the states. Each state's share of federal funding increased by at least 6.2%. Here's the list of how much additional FMAP funding each state is due to receive. The question is, with all the state cuts in medicaid funding happening across the country, what is going to happen to this potential increase in federal funds? Especially since

States would only be eligible for the FMAP increase if they ensure that their Medicaid eligibility criteria and enrollment/renewal procedures are no more restrictive than those in place on July 1, 2008.

So how narrowly are we going to define "Medicaid eligibility criteria and enrollment procedures"? In Hawaii, for example, the state put into effect substantial cuts in personal services (including skilled nursing) for children with disabilities under the age of 13. The letter sent out to parents on July 3, 2008 stated services were going to be re-evaluated for cuts for any child in a home based waiver program under the age of 13 and receiving more than 29 hours of services per week. Then in December, Hawaii cut another chunk from the personal services received by these same children, along with other participants (regardless of age) who were enrolled in the state's Medicaid 1915(c) waiver program providing Home and Community Based Services. I haven't heard anything about these services being reinstated. And I've already uploaded news articles showing another seven states are also in the process of completing first and in some cases, a second round of medicaid cuts. A lot of these cuts are aimed at the home services that allow our kids to stay at home with us. And in the middle of all this, what is happening with the funds for EPSDT? Mention of the program is strangely missing from the vast majority of articles I've been able to find on cuts in services for children with disabilities. I am not an economist. And right about now I'm beginning to wonder if the states need forensic economists in order to figure out where the EPSDT funding is being spent now and what's happening to it in the greater scheme of states cutting medicaid related services. EPSDT cannot be cut. Whether the services are provided through medical providers or your school district, your state absolutely cannot cut any service a doctor says is medically necessary for your child. If your child needs formula because he or she feeds through a tube, it can't be cut. If your child requires 24/7 skilled nursing, it can't be cut. If your child requires diapers, or specialized bathing equipment, these expenses cannot be cut. But they are. So what has happened to the EPSDT funds?