Transition to Independence Act Opens Doors for the Disabled
Last updated on August 28th, 2015 at 11:05 am
Like most special needs parents, I don’t have a lot of free time. Sometimes I can’t even keep up on the news or find time to vote (although I fixed that problem by voting by mail). But recently three senators put party lines aside to work together on the Transition to Independence Act and this time I put a few things on hold to read up on it.
This program would work through Medicaid to financially reward states that increase job training and employment opportunities for people with disabilities over the course of five years. It would also allow individuals with disabilities to buy their way into Medicaid. The act may improve the financial situation of disabled individuals as well as improve their working conditions and expand their possibilities. It will finally allow people to work and pursue a career without losing Medicaid benefits. You can read a summary of the bill here.
As with any piece of legislation this bill may have a long road ahead of it, but kudos to Senators Chuck Grassley (R-IA), Ron Wyden (D-OR) and Bob Casey, Jr. (D-PA) for stepping up to bring these issues into focus and for at least trying to take some action. While most of the media attention tends to focus on autism, people with other conditions, such as muscular dystrophy, will also benefit from the bill.
Transition to Independence Act – Primary Purpose:
- Improve opportunities for people with disabilities to obtain integrated employment and reduce their relegation to subminimum wages and segregated environments;
- Modernize and coordinate systems to offer cost-effective supports and services to people with disabilities consistent with the rising expectations of and for people with disabilities; and
- Ensure that people with disabilities and their families regularly receive accurate information about and have access to services and supports that promote self-determination, independence, productivity, and integration and inclusion.
Photo credit: Bureau of Land Management Oregon; CC license
NHTSA Proposes Side-Impact Crash Testing for Car Seats
Last updated on March 2nd, 2018 at 02:36 pm
On January 22nd, the National Highway Traffic Safety Administration (NHTSA) filed for proposed changes to the federal motor vehicle safety standards for child-restraint systems. For the first time, the changes would require side-impact crash testing on all car seats sold in the US for children weighing up to 40lbs.
Until now, federal rules have only covered how well car seats protect children in crashes from the front. But, as seen in a NY Times discussion of the proposed changes, “according to Matthew R. Maltese, head of biomechanics research at the Children’s Hospital of Philadelphia, side-impact crashes can hurt children in a variety of ways. While the door can intrude and strike a child in a car seat, the sheer impact of a collision can cause a child’s head to move suddenly and hit the seat or a part of the vehicle’s interior.” Now, for the first time, we are taking positive steps to prevent this.
According to the NHTSA press release, “car seats would be tested in a specially designed sled test that simulates a “T-bone” crash, where the front of a vehicle traveling 30mph strikes the side of a small passenger vehicle traveling at 15mph.” Also new to this test: a recently developed side-impact crash test dummy that represents a 3-year old child will be used in addition to the existing 12 month-old child dummy.
The goal of the proposed test will be for car seats to demonstrate that they can safely protect a child from harmful head contact with a crushed vehicle door as well as reduce the overall impact of the crash forces on a child’s head and chest. NHTSA estimates that making this change would save 5 lives and prevent 64 injuries annually.
If the proposal is adopted, there would be a 3-year time-frame after final rule publication for car-seat manufacturers to alter or adjust their products to meet the new requirements. And then it will likely be up to consumers to purchase a new car seat to replace their existing one. For now, NHTSA has posted its Notice of Proposed Rulemaking (in .pdf form) which provides 90 days for members of the general public to comment.
On a final note – my personal belief is that this is way overdue – and with 5 lives and 64 injuries experienced by children annually, a 3-year time-frame to meet the new requirements is 3-years too long. One preventable death is by far one too many. Would love to hear your thoughts…
Car Seat LATCH Rules to Change in January 2014
Last updated on August 19th, 2015 at 11:52 pm
A new rule that goes into effect in January 2014 will require car-seat makers to start using labels 
that warn parents NOT to use the Latch anchor system to install a car seat if the combined weight of the child and the seat is 65 pounds or higher.
The LATCH anchors (Lower Anchors and Tethers for Children) were designed to make child seats easier to install and have been required in vehicles since 2001, but child-safety seat advocates say the strength of the anchors can’t be guaranteed because they don’t take into account the weight of the child seat, which typically weighs 15 to 33 lbs.
In a USA Today article, according to Joseph Colella, one of five child-safety advocates who petitioned the National Highway Traffic Safety Administration (NHTSA) for a change to the rule, “the anchor requirements are based on old child seats and outdated recommendations on how long kids should be in child seats“.
But children are getting heavier and staying in child seats longer. In 2012 the American Academy of Pediatrics and NHTSA issued enhanced new guidelines on booster seat use for older children, recommending that children ride in a booster seat until they are big enough to fit in a seat belt properly, typically when the child is somewhere between 8-12 years old and about 4 feet 9 inches tall. Colella says “car makers aren’t able to guarantee the safety of heavier kids given the strength of LATCH anchors”. Very important to know!
So what does this mean for you?
Transportation Department spokeswoman Lynda Tran told USA Today: “While Latch makes it easier to properly install car seats in vehicles, it’s important for parents and caregivers to know that securing a child seat with a seat belt is equally as safe — and that they have the flexibility to use either system.”
So…if you have a child that weighs around 30 lbs, double check the weight of your car seat with the manufacturer. Make sure the weight of your child + the weight of that seat does not exceed 65 lbs. And while you’re having that conversation with them, double check the weight their LATCH anchors are rated to support. And if you have any doubt – use a seat belt instead of the LATCH to secure the seat. And have it checked at a NHTSA Car Seat Inspection Station. Use this locator to find the one that’s closest to you.
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Editors note: this post was originally run in June 2012, when the decision to change the LATCH rules was originally made. It is re-published here with minimal edits as very little has changed since then. Personally, I find it immensely disappointing that we would wait a year and a half to implement a change to a warning label when the lives of children are at risk.
Would love to hear your thoughts if you’d like to share them…
How Well Do You Know HIPAA (what keeps kids’ health data safe)?
Last updated on March 2nd, 2018 at 02:50 pm
The Health Insurance Portability and Accountability Act (HIPAA) was passed in 1996 in order to allow for transfer of one’s health insurance from one job to another, and, among other regulations, to protect all patients of physicians from having their personal information abused. When you take your child to his Doctor, he is allowed to collect certain private and sometimes intimate details of your health related history. With the institution of this law, this information must be handled in a way that will not disclose such information to anyone you do not wish to receive it. With each initial visit to a physician, you will be asked to sign a receipt that you in fact have been given a copy of the office’s HIPAA policy, whether or not you have read it. The law has been tweaked many times and will be re- tweaked this year again to more broadly include the use of Electronic Medical Records with all of its security hazards.
All of your (and your childrens’) very personal health data can only be used for the medical treatment of your child, and can be given to whoever you allow (in writing) to see that information and to nobody else except in the case of legal requirements. You can feel safe knowing that your personal life will remain personal and secure. The mandates in this law are very strict and the punishment for breach of these mandates by your health care provider can be quite harsh, from monetary fine to imprisonment. The law itself, by the very nature of legislation is long, intricate and boring to read but compliance of a medical practice with this law is an absolute. If any patient feels as though his or her rights have been violated, there is legal recourse one can take.
In order to remain in compliance with this law, here are some suggestions that health care professionals should monitor: a practitioner should occasionally walk around his office as if he were a patient and look at the various areas where he would be uncomfortable. Areas such as the front desk sign in area where it might be possible for a close by patient to view the information you are placing in the sign in log. The patient should only be asked what time his appointment is and his/her name; anything else could be construed as being personal information, and available to anyone within range. Also information on computer screens should never be visible to other patients as they walk by. There are many more areas of possible breach that a physician must be aware of and attempt to fix.
There is much more information about this topic and if there are any further questions let us know and I will deal with them in the future.
A Personal Perspective on Health Insurance, Kids & Health Reform
Last updated on March 2nd, 2018 at 11:22 am
With health care reform back in the news following the recent decision to institute a one-year delay for the large employer requirements and some Republican calls for a delay also to the individual mandate, I thought it would be a good time to tell a story that demonstrates the human cost and impact on children of our health insurance system – and the value that one family at least will find from the opportunity to purchase individual health insurance through the exchanges that are currently still required to start operating on October 1st of this year.
Through my studies for a Master’s degree in public health (almost finished!) I have heard different parts of the US health care system likened to Britain’s National Health System or NHS (regarding Medicare – coverage for our oldest citizens), to Germany’s social insurance system (regarding our employer-provided health insurance) and to any of a number of the least developed and poorest countries in the world when considering the uninsured in America who are too poor to pay for health insurance.
However, you do not need to be poor to find access to good quality, affordable health insurance a challenge. A 2013 Gallup poll found that employer-based health insurance has decreased for all income groups over the past 4 years – with the largest reductions for middle income individuals earning between $36,000 and $90,000 a year. Only 45% of Americans now receive health insurance through their employers, due to both recent increases in unemployment and an increasing trend for employers not to provide health coverage.
My good friend and hairstylist extraordinaire, MaLisa, is an excellent case in point. As a hairstylist, she is a self-employed business woman – and also the main earner for her family with her husband at home looking after their two children. Given her situation, MaLisa is forced to purchase health insurance in the individual market, trying to balance the high cost of premiums with the risk of substantial health care costs from her son’s severe asthma or her husband’s auto-immune condition.
Despite paying premiums of $800 per month – nearly $10,000 EACH YEAR – no one in MaLisa’s family is covered for any health care costs until a $5000 deductible PER PERSON has been paid out of MaLisa’s own pocket. So if each member of her family was significantly ill in a year – including herself – she could end up paying $20,000 on top of her $10,000 in premiums before getting any insurance benefit. And even though the deductible for her son has already been met this year – due to an acute asthma flare-up that required a 4-day hospital stay – the family is still required to pay over $740 per month for his expensive medication regimen, something they aren’t sure how they will manage given all the medical bills piling up. Cheaper drugs aren’t really an option as that’s what he was taking before recently being admitted to the hospital. Hospital staff half-jokingly asked if they could move away from Indiana, to a state that isn’t so bad for allergies or asthma.
A health insurance plan that MaLisa carried for a while from a previous employer did have somewhat better coverage and lower deductibles – but the COBRA rates were increasing exorbitant – at one point rising to $1400 per month (an annual cost of nearly $17,000). How many families can afford this level of fixed cost in their budget? Though my friend did ruefully admit that – in hindsight – it might have been better to pay these higher upfront costs given the level of health care issues their family has faced. Right now, she is just counting the days until 2014 when the individual health insurance exchanges are expected to begin operating under the Affordable Care Act – so that she and her family can access decent healthcare coverage at a rate that doesn’t present such dire financial consequences.
And my friend’s family has already benefited from health reform, since as of January, 2013 health insurers have been required to provide coverage for children for pre-existing conditions. Until that mandate came into effect, MaLisa couldn’t change insurance plans or her son’s asthma care would have been excluded. However, she had to fight for even this small improvement. Despite all the press about health reform, neither her health insurance carrier nor Indiana’s State Insurance Commissioner had any idea what she was talking about when she contacted them to say that her son had the right to this benefit. Coverage wasn’t forthcoming until she sent copies of the legal statute by registered mail to these supposed insurance experts. It just shows that it pays to do your homework and advocate for you and your family given all the changes in the health care environment.
Children’s Defense Fund Proposes New Gun Safety Laws: Is it Time?
Last updated on March 2nd, 2018 at 04:39 pm
Some chilling new statistics have just been released by the Children’s Defense Fund (Protect Children, Not Guns: Key Facts). A child or teen dies or is injured from guns every 30 minutes. The number of children under five who have died from guns was more than the number of law enforcement officers who died from guns in the line of duty in 2010. And between 1979 and 2010, 119,079 children and teens dies from guns…more than the total number of U.S. soldiers killed in action in the Vietnam, Korean, Afghanistan and Iraq wars combined.
These facts coupled with the Newtown, Connecticut tragedy have prompted the Children’s Defense Fund (CDF) to release a new federal policy agenda aimed at protecting children from the continued rise in gun violence in America. Their goal: to “keep guns out of the hands of children and those who would use them against children”. To that end, there are four gun safety laws in CDF’s agenda:
- Require consumer safety standards and childproof safety features for all guns. Subject guns to the same consumer product safety regulations that cover virtually every other consumer product. Currently the production and manufacture of guns is exempt from oversight by the Consumer Product Safety Commission. Every gun made in this country should be childproof and equipped with child safety locks and authorized user identification technology. Federal law also is silent on child access prevention. Congress should provide incentives for states to require gun owners to store their firearms and ammunition in a manner in which children and teens cannot access them.
- Ban assault weapons and high-capacity ammunition magazines. Enact a ban on assault weapons and high-capacity magazines and fix the loopholes in the 1994 federal Assault Weapons Ban (which ended in 2004) that undercut its effectiveness.
- Require background checks on anyone purchasing a gun. Close the gun show loophole. Federal law currently requires federally-licensed gun dealers to conduct background checks on every sale. A loophole in the law allows private dealers to sell guns without a license and allows buyers to avoid background checks. More than 40 percent of all guns in this country are sold with no background checks.
- Provide resources the Bureau of Alcohol, Tobacco and Firearms and other federal agencies need to keep our children and communities safe. Establish a national federal gun registry to help officials track guns when they are produced and purchased. Get rid of legislative barriers that prevent data collection on firearm ownership by law enforcement officials. Eliminate restrictions on gun violence prevention research by the Centers for Disease Control and Prevention and other federal agencies.
“The heartrending massacre of 20 six- and seven-year old children and six educators in 
Newtown, Connecticut must galvanize all of us to take action to protect children instead of guns,” said Marian Wright Edelman, president of the Children’s Defense Fund. “Gun violence saturates our children’s lives. More children and teens die from guns every three days than died in the Newtown massacre. What’s it going to take…?”
But are these new gun safety laws the right answer? Some will say yes, others no. I will bring one more piece of data into the picture before leaving you to decide.
None of us will forget what happened on December 14th. It also happened to be my birthday…another reason it will not be easy to forget. But some of you may not know one other thing happened that day:
On December 14th, at Chenpeng Village Primary School in China’s Henan province a 36-year-old man by the name of Min Yongjun stabbed an elderly woman and then proceeded to break into the elementary school flailing a knife, attacking and stabbing elementary school children, severing ears and fingers.
By the end of his rampage, 23 children were wounded. There was no connection between these two tragedies – between these two men other than the date and the fact that they targeted the most innocent of victims. There was however one important distinction. Min Yonguin had only a knife…and no child died that day.
(note: story coverage provided by cnn.com and the economist.com)
So, I ask you once again – with what I am discovering is a less impartial heart than I thought it was. What do you think of these proposed gun safety laws? Do you think they are what we need?
Do you think they will keep our kids safe??
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References:
- http://www.childrensdefense.org/child-research-data-publications/data/state-data-repository/safe-start-pillar.pdf
- http://www.childrensdefense.org/child-research-data-publications/data/state-data-repository/protect-children-not-guns-key-facts-2013.pdf
- http://www.economist.com/news/leaders/21568735-only-drastic-gun-control-could-make-big-difference-small-measures-can-help-bit-newtowns
- http://www.cnn.com/2012/12/24/world/asia/china-school-knife-attack/index.html
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For more information on the CDF Policy Agenda contact Patti Hassler, Vice President of Communications and Outreach, at (202) 662-3554 or phassler@childrensdefense.org.
Follow the conversation on Twitter #ProtectChildrenNotGuns.
