Children’s Special Health Care Needs Can Bankrupt Families
Posted July 21st, 2009 by Say Ahhh!As policymakers consider health reform, they will need to consider the needs of families raising children with special health care needs. These families are not only hit hard in the pocketbook, they face overwhelming bureaucratic obstacles to coverage. We asked Meg Comeau to address this issue from a policy perspective and from her personal experience raising a daughter with special health care needs.
“Promises are like babies: easy to make, hard to deliver.” – Author Unknown
In my wallet, I have a small piece of white plastic with my name on it under the logo of a well-known health insurance company. To me, this insurance card represents a promise, so to speak, that if I need access to the high-tech world of modern-day health care services I can get it. In their wallets, my husband and daughter each have a similar card with their names on it. For a small co-pay and with reasonable deductibles, we can see a doctor or get a prescription filled whenever it’s necessary. The promise that we can get what we need is for the most part fulfilled and we know we are very fortunate in this.
But for one of us, that small white card is not enough. Equally important to us all is the little blue card that also sits in my daughter, Sarah’s wallet. This card displays the logo of the Massachusetts Medicaid program. Sarah was born with a complex genetic disorder that has seriously impacted her physical, developmental and behavioral health. She requires many primary and specialty care doctor visits every month, an average of 6 prescription medications per day, habilitative physical, speech, and occupational therapies, medical equipment and supplies such as oxygen and more. Without the supplemental coverage she receives through Massachusetts Medicaid, the small co-pays and reasonable deductibles our primary insurance requires would have overwhelmed our middle-income family long ago.
- * Higher health care costs (co-pays, deductibles, uncovered expenses, limits in coverage, caps on coverage)
- * Higher costs for expenses every family has (child care, electricity, transportation, food/shelter/clothing)
- * Loss of employment income and access to private insurance (the majority of care for children with special health care needs is provided by families, resulting in fewer opportunities to work)
Some currently circulating health reform proposals contain elements that will offer protections to families. Key elements include guaranteed issue; exclusions for pre-existing policies; limits on out-of-pocket expenditures; prohibitions against lifetime benefit caps; sliding premium scales to promote affordability; use of the medical home model; and coverage for flexible benefits and care provided at home. With mechanisms such as these in place, all three pathways to financial hardship can be circumvented, and family financial security protected. Effective reform strategies must go beyond providing simple coverage for all Americans.
Meaningful reform must encompass universal access to comprehensive coverage, an adequate range and depth of health benefits, and flexible financing for family supports. In the past week or so, we’ve begun to realize just how difficult delivering on the promise of health care reform will be. Let’s keep in mind, as we move forward with this complicated but necessary work, that what ends up behind those little plastic cards represents a promise that must be kept not just to ourselves but to our children, particularly the most vulnerable.
10 Comments
July 29, 2009 at 4:23 am by Chez VondaI appreciate the comments and concerns raised. I think the issue is in whether we will change the standard of practice where coverage for children with special health care needs is concerned. Typically, services for this population are carved-out of other regulations, like Medicare. I see no impetus to change that now, though such decisions fall on States rather than Federal law makers. There is likely an opportunity to work with policy makers and I stress local program administrators to improve systems of care for CSHCN and their families. The rising cost of health care is a major concern for families of CSHCN because some necessary items “can not” be covered by insurance and can be extremely costly month to month on a typical income. In the interim of the perfect reform policy/regulation, families should consider financially feasible ways to offset their health care costs and improve their quality of life. I offer http://www.exclusivewellnessnow.com for starters.
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July 27, 2009 at 5:30 pm by Not this reformI’d rather be bankrupt than have a dead child! This health care reform will not protect the most vulnerable, it will target them as too costly. Here are some points from the health care bill: (our representitives may not be reading the bill but some of us are)
Pg 22 of the HC Bill MANDATES the Govt will audit books of ALL EMPLOYERS that self insure!!
Pg 30 Sec 123 of HC bill – THERE WILL BE A GOVT COMMITTEE that decides what treatments/benefits you get
Pg 29 lines 4-16 in the HC bill – YOUR HEALTHCARE IS RATIONED!!! You can only get so much “care” per year
Pg 42 of HC Bill – The Health Choices Commissioner will choose your HC Benefits 4 you. You have no choice!
PG 50 Section 152 in HC bill – HC will be provided to ALL non US citizens, illegal or otherwise
Pg 58HC Bill – Govt will have real-time access to individs finances & a National ID Healthcard will be issued!
Pg 59 HC Bill lines 21-24 Govt will have direct access 2 your banks accts for elective funds transfer
PG 65 Sec 164 is a payoff subsidized plan for retirees and their families in Unions & community orgs (ACORN).
Pg 72 Lines 8-14 Govt is creating an HC Exchange to bring private HC plans under Govt control.
PG 84 Sec 203 HC bill – Govt mandates ALL benefit pkgs for private HC plans in the Exchange
PG 85 Line 7 HC Bill – Specs for Benefit Levels for Plans = The Govt will ration your Healthcare!
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Rosetess Reply:
September 17th, 2009 at 5:05 pm
@Not this reform, You Lie.
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I don’t see how the current legislative reforms will help with these special needs cases. President Obama appears to approach our healthcare cost crisis using evidence-based medicine and panels of experts who decide what services and what populations would recieve care. His goal is to control cost, which means to deny services, most targeted towards the elderly who share the greatest percentage of healthcare spend. However, what makes us believe that if services are restricted for the elderly, they cannot turn their attention to restricting services to special needs kids as well?
This is my greatest concern with a government takeover of the healtcare industry. Citizens with dissabling medical conditions will be the first to target against medical savings when the government is looking to reduce costs. If the President can look a woman in the face and tell her that her 100 year old mother would not likely have qualified for a pacemaker that has resulted in adding 5+ more years to her life, what makes us think he won’t look the rest of us with special needs kids in the face and tell us that the government can only provide pain medication to comfort our child, but deny the needed services to keep them alive? Any desperate attempts to thwart the government decision will lead to prosecution of fraud to healthcare workers who try to help (this happens today in Medicare).
The reforms MomsRising.Org asks may make things worse for all of our citizens in this country. And once it is done, it will be nearly impossible to reverse. This is too big a risk to be placed in the creative hands of politicians we don’t trust.
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Emily Reply:
July 27th, 2009 at 5:20 pm
@chris, I totally agree. As a mother of two (and God willing, more),MomsRising is hurting families instead of helping them. Obama’s health care bill will target those who are most in need and consider them a drain on society instead of a “Gift” from God. I know many families who can’t afford healthcare but somehow they get it through our not so perfect system. Yes, some people do end up paying out of pocket for some of their care and yes it may be draining on their finances but isn’t it worth it to get the care they want and need instead of being told they are not worth the cost. Socialized health care has never worked! Government involvement is the problem not the answer.
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Thanks for sharing your personal experience and professional knowledge on health coverage for children with special health concerns. It shows what is at stake in health reform. Health care bills are the number one reason for personal bankruptcies in the nation. We need health reform now!
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July 22, 2009 at 3:22 pm by Meg ComeauThank you all for the positive comments. It’s a real pleasure to be part of such an informed and passionate on-line community. And I highly recommend the Sloan Center’s work – check it out when you have a chance! Warmly, Meg Comeau, Director, the Catalyst Center at the Boston University School of Public Health.
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July 22, 2009 at 11:10 am by Karen CordayThank you for this post; it’s a very timely topic. If anyone wants more information on working parents caring for children with disabilities, please check out the Sloan Network’s Topic Page: http://wfnetwork.bc.edu/topic.php?id=40
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July 21, 2009 at 10:38 pm by facechinathanks for your sharing
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July 21, 2009 at 3:47 pm by CarolynI’m anxious for health care reform and hope new policies will improve access to quality care for all who need it.
One of the most common chronic diseases among children is asthma which affects 9 million children in the United States, including my two kids. The monthly cost of medications, specialist visits, testing and quality care stretches many families’ ability to pay and properly treat their child’s asthma. In such an industrialized nation as ours, it’s unethical to have such limits on accessing health care. Reform is needed STAT!
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