My deaf friend, who I grew up with and went to deaf school with in St. Louis, was just told that she'd have to stop working full-time to keep her sick son on Medicaid. She's a great mother, a domestic abuse survivor, and she's stuck in a system that doesn't reward her for getting a better education to find a high-paying job to help provide her family. Her employer won't cover her son's expensive medical condition, as the medicine costs about $200,000 a year, and he's already reached the million mark cap.
This was her e-mail to me:
I find out yesterday that I'm not allowed to work full time for 9 more yrs, til my son with the health condition is 18- It's either work full time and lose his medicaid, go broke by taking out loans to pay for his meds, risk his life in other words OR don't work and keep his insurance longer- They need better ins. plans for people and kids with chronic conditions like my son so they're allowed to work & earn a living!
The options she now face are unemployment, staying on SSDI/SSI, and working under the table in a job in the restaurant industry or in the construction industry like many of my friends do in the deaf community. This is what she's willing to do to keep her son on Medicaid so he can get the medicines he needs for his condition.
The short little girl in the middle is me, and the girl to the far right with the broad grin is my friend. She is just about the most open, warm-hearted, and loving person you could ever meet. It makes me angry to think that our country has put her in this situation of facing unemployment or underemployment just to get medical care for her son who has severe hemophilia type A. That's the kind of wrong-headed thinking we have in our country.
She's also engaged, but can't legally marry her boyfriend because if she does, she'd lose Medicaid and the chance to cover her son's expensive chronic medical condition. She doesn't know what else to do. She's a parent to two other little boys, and since they're now over the age of 6, the income allowed to her under Medicaid is about $18,000 given the Wyoming website from my understanding.
The Senate bill does expand Medicaid to 133% of the Federal Poverty Level, which would increase the monthly income my friend can take in to about $2,445 a month, or nearly $29,000 a year. The House bill, on the other hand, would expand Medicaid to 150% of the Federal Poverty Level, which would be $33,075 for a family of four.
My friend would like to be a special education teacher as that's what she wants to finish her degree in. That kind of income she'd get in that field would disqualify her from Medicaid, and she doesn't know if she'd get her son's condition covered under state employer insurance plans. If she does legally marry, she'd be disqualified as well from Medicaid as I mentioned above, and from SCHIP since her boyfriend makes more than she does, and his insurance plan doesn't cover hemophilia for her son. She's trying to find a state program in other states that would cover this condition for her son, and see if she can expand her income vastly and marry her boyfriend as well.
Even though the Senate bill would immediately ban pre-existing conditions for children on private insurance plans, and ban lifetime and annual caps in insurance plans, more work still needs to be done on this issue, and to ensure a better safety net is in place for mothers like my deaf friend and her son because the Medicaid expansion in the Senate bill won't take place for four more years.
Here's the National Hemophilia Foundation on the Senate bill:
There are also some differences between the two bills on issues of particular importance to the bleeding disorders community. For example, in the Senate bill, lifetime caps are eliminated six months after enactment for new plans, but existing, grandfathered plans can continue to have lifetime caps indefinitely.
In the House bill, lifetime caps are eliminated in all plans immediately. Annual limits are eliminated in 2014 for new plans in the Senate bill; in the House bill, annual caps are prohibited in 2013 for new plans and 2018 for existing plans.
You can click to see the letter which they sent shortly after the election in Massachussetts about their priorities for hemophiliacs in health care reform.
There are still lingering concerns about the annual limits exception for existing, grandfathered plans, as you can see in theNew York Times below:
The Senate bill, on the other hand, would eliminate lifetime limits for new health plans six months after the law’s enactment. Annual limits would be prohibited for new plans starting in 2014 and allowed only on a restricted basis before then. But current plans would get a pass: health plans that people already belong to at the time of enactment would be permanently exempt from the requirement to eliminate lifetime and annual caps.
It’s a sticky issue, and policy analysts agree that the devil will be in the details. For example: What exactly is considered a new plan? Most plans change some details of their coverage every year. "If even minor changes mean a new plan, then the dynamics of the market mean that grandfathered plans will disappear very quickly," said Stephen Finan, senior director of the American Cancer Society Cancer Action Network.
As you can see from the list of immediate benefits below on this page, the annual limits restriction will be defined by the Secretary of Health and Human Services:
Restricted Annual Limits on Coverage
* The Patient Protection and Affordable Care Act will tightly restrict insurance companies’ use of annual limits to ensure access to needed care, effective six months after enactment for all new health plans. These tight restrictions will be defined by the Secretary of Health and Human Services. When the Exchanges are operational, the use of annual limits will be banned.
A lot of the rule-making and definition of benefits will be set by the Secretary of Health and Human Services and by state insurance commissioners within each state-based exchange. Even if the Senate bill passes with a reconciliation fix, we'll still need to keep our eye on how these benefits will be defined, and how the Secretary of Health and Human Services will define these annual limits until 2014 when the exchanges are operational. A lot of times, the devil is always in the details, which is why we have to remain vigilant.
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