I formed this organization in August 2009 in order to extend the advocacy I was doing on my daughter’s behalf to other families in similar situations. I was in email contact with both the Center for Medicare and Medicaid Services (the federal Medicaid regulatory folks) and the Office for Civil Rights at DHHS as well.
When OCR handed my daughter’s file over to CMS the end of that month, having the organization gave me a way to have authorizations signed so I could make initial contact with federal authorities on behalf of the families.
I was already working with one family here on Kauai: four-year-old H.M. who could have over 400 seizures a day, which classified her as medically fragile. Without skilled nursing in the house 24 hours a day, seven days a week, she was at risk of requiring institutionalization. She was facing a reduction in the limited home services she already had, which were still less than what the child’s physician had written was “medically necessary.”
Over the next few months I was contacted by other families with children (including adult children) who required full-time care in the home and were suddenly finding their services cut.
When politicians talk about cutting Medicaid, there is a specific population targeted for budget cuts, and these are the people who cannot possibly live at home, likely for the rest of their lives, without help. These cuts not only destroy the quality of life for people with disabilities, but they destroy local jobs for the nurses, personal assistants and caregivers who are paid by Medicaid to keep people with disabilities, including children, alive in their homes rather than in an institution.
We want you to see the faces of the people who are being hurt by these cuts.
H.M. remains in an appeals process at this time. Thanks to the legal involvement of Honolulu attorneys Rafael Del Castillo and Arleen Jouxson-Meyers, H.M. is finally being authorized by Unitedhealth for 24/7 skilled nursing, albeit in small, temporary increments.
Jouxson-Meyers and Del Castillo represented 21 year old Erik Sorenson before the Hawaii state insurance commission in early 2010. Erik was a quadriplegic who could not cough, toilet or turn himself over in bed without help. The writtten decision, issued in February, read in part that
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.
Erik’s story has been told in more detail elsewhere. Jouxson-Meyers and Del Castillo got Wellcare to offer Erik 24/7 care, but Erik turned it down. In a declaration filed in Hawaii District Court, Erik said he felt threatened with institutionalization by Wellcare, and that fear ruled his life, and that of his mother and sister with whom he lived. Erik died a month later because there was no trained nurse watching him while he slept, who could have helped him when he began choking.
Six year old Audrey Delos Santos has such severe brain damage that she had to be institutionalized for much of her first five years. She was able to come home in July 2008 with home nursing help through Medicaid. In late 2009, UnitedHealth announced to her family that they were cutting her service hours from seventy-five a week to sixty a week.
Jouxson-Meyers and Del Castillo presented expert testimony at Audrey’s hearing that what the little girl really needed was 24/7 skilled nursing. The insurance commissioner could not render a decision on this since it was not part of the complaint.
The Commission did rule, however, that the cut in services was “not reasonable.” It also accused UnitedHealth of “slavish reliance” on a “diagnostic tool” that “has not been well validated empirically according to an outside standard of practice.”
As of June 20, however, Jouxson-Meyers and Del Castillo have negotiated 24/7 nursing care for Audrey, which is being approved by UnitedHealth in very small increments of time.