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.
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