I’ve said before that health care reform is of vital importance to the disability community. To further illustrate my point, I offer the case of Ian Pearl. Pearl has spinal muscular atrophy, uses a ventilator, and received private duty nursing under his father’s small group insurance plan. Guardian, the insurer, cancelled insurance policies across the entire state to stop paying for high-cost beneficiaries like Pearl. One Guardian executive revealed the company’s naked greed when he referred to these beneficiaries as “dogs” in an internal e-mail.
Pearl lives in Florida, which doesn’t provide nursing care as part of its Medicaid program. His family is wealthy enough to continue funding his care for a few years, but that money will eventually run out. Pearl may eventually be faced with the untenable choice of entering an institution or moving to another state that does provide nursing care.
The bills under consideration wouldn’t force insurers to offer nursing care as a benefit, but it could prevent this kind of large-scale rescission as a cost-cutting measure. And at some point, the feds really need to look at creating a uniform package of home care services for people with severe disabilities that is largely or completely federally funded.
