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More Reasons the Disabled Should Welcome Reform

Harold Pollack is a professor at the University of Chicago School of Social Service Administration and Special Correspondent for The Treatment.

The disability community has played a puzzlingly small role in the health care debate. Advocacy groups have been active around the country and on Capitol Hill. Yet public perceptions have not caught up with the reality that each of the Senate and House bills now being considered would be hugely beneficial to Americans who live with physical or mental disabilities. Although word has (mostly) gotten out that there is no such thing as death panels, public conversation has failed to track what the leading bills would accomplish, and what they will probably leave undone, in addressing the particular needs of people living with chronic disabilities. (Lisa Iezzoni noted many of these issues in a Curbside Consult this week.)

Today, Family Voices, one of America’s leading advocacy groups for children and youth with special needs, has weighed in. Their statement is shown below. This group credibly speaks for a large proportion of families facing these medical, educational, economic, and social challenges.

I hope Senator Baucus and his colleagues read Family Voice’s statement. I also hope that they reconsider the poor protection they are providing against high out-of-pocket costs for many families facing serious medical challenges. Across America, there are parents arriving home from tertiary care hospitals carrying a very sick infant and facing a mailbox stuffed with huge medical bills.

FAMILY VOICES SUPPORTS HEALTH CARE REFORM Proposals Will Increase Coverage for Children with Special Health Care Needs

September 16, 2009--Albuquerque, NM--Family Voices, the national family-led organization that aims to achieve family-centered care for all children and youth with special health care needs (CYSHCN) and/or disabilities, today issued a call in support of health insurance reform. The pending proposals for national health insurance reform will increase the services available to children with special healthcare needs and disabilities, in part by eliminating lifetime and annual caps, setting out-of-pocket spending limits, getting rid of pre-existing condition exclusions, and improving care coordination.

Family Voices Executive Director and parent of two children with special health care needs, Dr. Sophie Arao-Nguyen states, "Family Voices wants to correct misinformation and distortions, making clear how important health reform is to families with children who have special health care needs. Our families will be so much better off with health care reform."

With families of CYSHCN in all 50 states and the District of Columbia, Family Voices hears every day about the consequences families of CYSHCN experience with the current health care system—families driven into medical debt due to the lack of out-of-pocket spending limits in their private insurance plan; insurance plans that don't cover critical services or a wheelchair; and having to turn down a new job because of their child's pre-existing condition.

Families that include children with special health care needs have been paying more and more for less and less health insurance coverage, going broke trying to get the medical care their child needs. The daughter of Lauren Agoratus in New Jersey was born with kidney disease and autism, spending the first two weeks of life in a neonatal intensive care unit. Although she was covered by two different insurers, the family still had to grapple with the high costs of medical care. The first bill from a children's hospital was $28,000. Despite no previous debt, the family took on thousands of dollars in medical expenses and almost lost their home.

Pending proposals for national health insurance reform will help families of children with special health care needs and disabilities. All of the proposals would provide basic protections against these egregious insurance company practices, providing a real measure of health and financial security that families now lack. Children with special health care needs and their families need health insurance reform now!