Category Archives: Advocacy and Health Policy

Children’s at the Capitol: Newborn screening comes to a vote

Update: Late Thursday night, April 10, we were disappointed to hear that the newborn screening vote scheduled for that day was unexpectedly pulled from the schedule. We fully expect that newborn screening will still be voted on this session, likely later in April. Help us make sure that legislators know how critical this program is for child health by contacting your state representatives (action link below)!


Today the Minnesota House of Representatives will be considering and voting on a bill to restore Minnesota’s newborn screening program, which is credited with saving more than 5,000 lives since its inception 50 years ago. We’ve provided the streaming video of the House floor session below, though the debate on newborn screening may not happen until later today.

Urgent action needed

Up until the House floor vote happens, you can contact your state representative and ask for his or her support on the Newborn Screening bill, H.F. 2526, authored by Representative Kim Norton. Taking action is easy, and it only takes a minute! This bill is critically important to newborn health and your legislators need to hear that you support this program today. (A couple things to note about the action page: 1. You’ll need to enter your full ZIP code (first 5 numbers + 4-digit extension) in order to connect with your state rep. 2. Use “MN” instead of “Minnesota.”)

What is newborn screening?

The program is simple: At birth, all newborns have a small blood sample collected through a heal prick. The blood spots are put onto a card and then tested for more than 50 genetic and chromosomal abnormalities. These tests are essential in detecting many serious and often hidden conditions, including some that, if diagnosed and treated early, can have a critical impact on the health of a child.

Why is this debate happening?

Over the past few years, the newborn screening program has been modified so that currently the Minnesota Department of Health can only retain blood spots for a short period of time before destroying them, possibly missing the window of diagnosis.

The problem is that there are many reasons these samples should be kept on hand, including: some conditions can take several months to diagnose; cards may be needed for reassessment at a later date; or they may be used for comparison when a younger sibling is born. Without long-term storage, we lose the ability to go back and review the samples when critical health questions arise.

Watch it live:

Watch live streaming video from uptakemnhouse at livestream.com

Video: Minnesota Senate debate over anti-bullying bill

Minnesota state capitol, Senate chamber

The Minnesota Senate will debate an anti-bullying bill Thursday, April 3, 2014.

Children’s at the Capitol: Minnesota Senate brings Safe Schools Act to a floor vote

Today the Minnesota State Senate will consider and vote on the Safe and Supportive Schools Act, a bill that would redefine Minnesota’s current 37-word law on bullying, one of the weakest in the country.

Last year, Children’s explored the many ways in which bullying affects kids. We found that:

  • Bullying is common in Minnesota: About one in seven Minnesota children are bullied regularly.
  • Bullying is bad for health: Children who are bullied are more likely than their peers to suffer from anxiety, depression, loneliness and post-traumatic stress.
  • Kids with special needs are bullied at high rates: In a recent study, 94 percent of students with disabilities reported experiencing some form of victimization.

That’s why Children’s supports passage of the Safe and Supportive Schools Act. We hope you’ll tune in to the live floor debate and watch as our state senators discuss, amend and vote on this bill. Don’t know who represents you? Find out now!

You also can learn more about our work on bullying and find helpful resources at childrensmn.org/bullying.

Watch live streaming video from uptakemnsenate at livestream.com

Children’s at the Capitol: A simple test can save a child’s life

Since the newborn-screening program began, more than 5,000 children have been saved. (iStock photo / Getty Images)

Every parent hopes and dreams for a happy, healthy child. Unfortunately, those dreams don’t always come true. Sometimes children are born with serious conditions that impact their health, but if caught early, many can be treated and the severity lessened. Since the newborn-screening program began, more than 5,000 children have been saved; children like Zak and Ella. Thanks to newborn screening, Ella was diagnosed early with Cystic Fibrosis (CF) and because the blood spots and test results were saved, doctors were also able to diagnose her older brother with CF when he became sick.

The Newborn Screening Program tests newborns between 24-48 hours after birth for more than 50 rare, life-threatening disorders; disorders that if left untreated, can result in illness, physical disabilities, learning and developmental disabilities, hearing loss or even death. Yet early treatment and diagnosis, medications, and/or changes in diet can prevent or lessen the impact of most of these health problems.

Two years ago, changes were made to the program that drastically altered the amount of time blood spots and test results could be retained. Now, after only 71 days parents and providers no longer have access to blood spots, despite the fact that testing can often take up to six months or longer to confirm a diagnosis. After two years, parents have no access to data (unless they make a special request) and therefore lose the ability to access that critical information for the purposes of retroactive investigation or sibling comparisons. And lastly, these changes mean that the department of health cannot use de-identified information for research to create new life-saving tests.

This year, legislation is being proposed to return Minnesota’s Newborn Screening program back to the nation-leading one it once was. House File 2526/Senate File 2047 would allow parents to store their children’s blood spots and test results indefinitely, preserving access to the life-saving information they need. We owe it to our kids, their parents and our communities to strengthen programs that can be used to not only save lives but to protect those in the generations to come.

Until further legislative changes take place, parents can request to have their blood spots and test results retained for a longer period of time on the Minnesota Department of Health website.

Take action!

You can help restore Minnesota’s Newborn Screening Program to its nation-leading status by calling members of the Senate Judiciary committee by Thursday, March 20th, 2014 at 5 p.m. and asking for their support of the Newborn Screening bill, H.F. 2526/S.F. 2047.

Calling is easy and it just takes a minute! (Phone numbers below). If you are a constituent of the person you call, make sure to let them know! Look up your legislators and compare them to the list below. Here is a sample of what you can say:

———

Hello,

My name is [your name] and I am calling to ask for Representative [last name]‘s/Senator [last name]‘s support of the Newborn screening bill, H.F. 2526/S.F. 2047.

This bill will allow parents and families to have access to the newborn screening spots and test results for a longer period of time, allowing for follow-up care re-analyses and sibling comparisons. I support this bill because it will help all children have the best chance for a healthy start in life. I hope [Legislator's name] will support it as well, by voting in favor when the bill is heard in committee.

Thank you!

Once you call committee members, send a note to Katie Rojas-Jahn at Katherine.Rojas-Jahn@childrensmn.org to let us know you took action. 

Here’s who to call:

Senate Judiciary committee members

Chair: Senator Ron Latz 651-297-8065

Vice Chair: Senator Barb Goodwin 651-296-4334

Senator Warren Limmer 651-296-2159

Senator Bobby Joe Champion 651-296-9246

Senator Dan D. Hall 651-296-5975

Senator Kathy Sheran 651-296-6153

Senator Kari Dziedzic 651-296-7809

Senator Scott J. Newman 651-296-4131

Children’s at the Capitol: Child health and wellbeing a big focus this year

(Kristin Marz, kristinized / Flckr)

Briefcases and business suits are lining the halls of the Capitol once again as the legislature reconvened for the 2014 session this week. The governor and legislative leaders have been promising a shorter, more focused session, but with all 134 house members and the governor up for re-election in November, legislators will be working on legislative successes they can take back to their districts.

This year, Children’s will be supporting several policies that impact the health of kids in our state.

School lunches
Recently, the internet exploded with stories about a school in Utah that was denying children lunches who couldn’t pay their lunch bill. Not only were they refusing to feed the children but they were throwing lunches away right in front of them. Unfortunately, amidst the uproar and outrage we learned that many schools in Minnesota do the same. A recent report from Legal Aid showed that 15 percent of Minnesota school districts report that their policies allow lunchroom staff to refuse hot meals to students who can’t pay.

As the state’s leading provider of health care for children, we know this is unacceptable. Children need food to grow and to learn. And they shouldn’t be punished or stigmatized because their family has limited resources or because someone forgot to pay a bill.

Children’s is part of a coalition working to put a stop to this practice and will advocate providing all students with access to a healthy school lunch. With an estimated cost to the state of $3.5 million, the costs of not providing children with adequate nutrition are far greater.

Newborn screening
Since its inception over 50 years ago, Minnesota’s newborn screening program has saved the lives of over 5,000 babies. But once a nation-leading program, recent legislative changes have begun to put Minnesota children at risk.

Between 24-48 hours after birth, blood is taken from a baby’s heel and tested for over 50 congenital conditions including cystic fibrosis and sickle cell disease; conditions that often are asymptomatic at birth but that once detected can be treated. Prior to 2013, the test results and data were stored so that at any time they could be accessed for additional testing. Unfortunately, in 2013, changes were made so that test results and blood spots would be destroyed after two years and 71 days, respectively. This means that millions of children’s results are now being destroyed.

We will be working to restore the newborn screening program to ensure that parents and children have the option and ability to save their test results for future use. You can read the stories of just a few of the children that have been saved by the program.

Mandatory flu vaccines for health care providers
This flu season, Children’s has seen over 520 confirmed cases of the flu. For some patients, it’s a quick diagnosis and visit. For others, it can mean an overnight stay, admission to our ICU, or even requiring ECMO (heart-lung bypass) treatment. Children and those with immune-suppressed systems are the most vulnerable, and for a very small few, they may never survive.

We know that a hospital should be the place where people and children go when they are sick, not to become sick. Being protected from the influenza virus is one small but important step in doing that, so Children’s is supporting a bill that would make flu vaccines mandatory for health care providers.

The good news is that Children’s is already a leader among hospitals. Ninety-three percent of our employees receive their vaccination. But we can do better and so can many other hospitals.

Early childhood education scholarships
Healthy children are learning children. Research shows that investment in high-quality early childhood education improves health outcomes, socio-economic status and school achievement. Every year, over 50 percent of new kindergartners are not prepared with the skills necessary to succeed in school.  As a result, many children lag behind their peers never able to catch up.

Our health care providers know how crucial education and developmental opportunities are for children ages 0-5. That is why we have joined MinneMinds, a coalition of non-profits, education organizations, health care providers, and businesses, that are devoted to assuring access to high-quality early education programs for our early learners most in need.

Photo by Kristin Marz (ristinized on Flckr)

Learning more about the health of our community

This fall, Children’s Hospitals and Clinics of Minnesota completed a valuable process to help us better understand pressing health needs in the communities we serve.

Under the Affordable Care Act, all non-profit hospitals are required to conduct a community health needs assessment every three years. The intention is to help hospitals understand the most pressing health needs in the communities they serve and to explore how the hospital can support efforts to address these needs.

The community we looked at

Map of the community boundaries as defined in the 2013 Children's CHNAChildren’s serves families from every county in Minnesota, and a majority of counties in the four surrounding states (Wisconsin, North Dakota, South Dakota and Iowa). However, for the purposes of this health needs assessment, we defined the seven-county metro area as our “broader community.” From there, we also took a closer look at the five school districts (Minneapolis, St. Paul, South St. Paul, Richfield and West St. Paul – Mendota Heights – Eagan) that surround our hospital campuses in Minneapolis and St. Paul. We called this group of five school districts our “immediate community.”

What we found

The health needs assessment findings largely reflect the experiences of our medical providers and patient families. The needs we identified are related to overarching community health problems that can’t be solved by one institution alone, but instead will require the commitment and collaboration of many organizations and individuals to solve. The identified areas of health need are the following:

  • Access to care
  • Maternal and child health
  • Mental health
  • Childhood obesity
  • Youth asthma
  • Support for families/caregivers for children with special needs

What we’re doing

At Children’s, we are working to address all of the health needs identified in our CHNA through many of our clinical services and community engagement work. Over the coming weeks, we’ll highlight some of our programs right here on the Mighty blog.

Today we’re looking at how Children’s is addressing health needs in the area of access to care.

Children’s has long been committed to ensuring that all children who come to us receive the care they need, regardless of ability to pay. Approximately 42 percent of the children we care for rely on Medicaid, for example. In addition to serving these children, we provide extensive interpreter services which include having interpreters on staff for the three most common non-English languages (Spanish, Somali and Hmong) our patients speak.

Families can also access our family resource centers, which houses financial counselors who assist families in applying for public health insurance programs and financial assistance. Our financial counselors are now also certified application counselors that can assist families in signing up for health insurance through Minnesota’s new insurance exchange, MNSure.

Over the next three years, we plan to take on several additional initiatives that deal directly with access to care, including: improving collection and analysis of data to better understand health disparities and investing in strengthening relationships with community stakeholders to better understand the health needs and assets in underserved communities.

Learn more

You can learn more about Children’s work in the local community at childrensMN.org/community. This page houses all information on our community needs assessment, implementation strategy and past community benefit reports.

To provide feedback on the health needs assessment or implementation strategy, please contact Katie Rojas-Jahn at Katherine.Rojas-Jahn@childrensmn.org.

World AIDS Day: Getting to zero

Fatumata, whose name has been changed, is a 14-year-old girl who lived in Eastern Africa all of her life before coming to Minnesota in 2010. She grew up in a refugee camp with her younger brother and sister and her parents. She had to take medicine every day, and sometimes she was very sick. But mostly she liked to play with her friends and help her mother with the chores.  Fatumata noticed that some of the people in the camp avoided her and her family, and she was not allowed to go to school with the other children. She didn’t know why.

Then one day, Fatumata’s father became very ill and eventually passed away.  Soon after, her mother became too sick to care for her and her siblings, and her uncle came to tell her that she would be leaving the camp to go and live with his family in America. Fatumata cried because she did not want to leave her mother, but her mother told her that she would be able to grow and be healthy where she was going and that they would see each other again.

So Fatumata and her siblings came to Minnesota. It was very cold and, at first, she didn’t understand what anyone was saying.  Soon she was able to go to school for the first time, and she learned English, and she continued to take her medications and grow strong and healthy. Today, Fatumata knows why she takes medications. She knows the name of her disease and doesn’t fear her HIV. She has a dedicated medical team at Children’s who provide care and support to her and her family. Fatumata is looking forward to the day when she will be able to go to college and some day, have a healthy family of her own.

Dec. 1 marked the 25th anniversary of World AIDS Day.  It is an opportunity for us to come together to show support for people living with HIV and AIDS around the world and at home, to remember those who have died from this disease, and to commit to “getting to zero” in the fight against HIV:  zero new infections and zero deaths from HIV and AIDS.

HIV today

Around the world, there are an estimated 34 million people living with HIV. About 3.3 million are children under 15.  In addition, around 17.3 million children have lost one or both parents to AIDS and millions more have been affected by the epidemic. Every day, almost 7,000 people become infected with HIV and nearly 5,000 people die from AIDS.  In 2011, 230,000 of those who lost their lives were children, according to UNICEF.

In the United States approximately 1.1 million people are living with HIV, and in Minnesota, just over 7,500 of our neighbors, family members, and friends are living with HIV and AIDS, according to the Minnesota Department of Health.

What is Children’s doing in the fight against HIV?

As the largest provider of care to HIV-infected children in Minnesota, we provide medical care to more than 100 children infected with HIV every year.  Children come to us from all over Minnesota and all over the world. Many of the children in our care have been adopted from countries in Asia, Africa, Eastern Europe, and the Caribbean.  Many more are refugees and immigrants, who may not be able to access treatment in their own countries. In addition to expert medical care, families can access specialized support services funded through the federal Ryan White CARE Act, including education, family case management and mental health services.

What can you do?

1. Get tested, know your status! HIV testing is recommended as a routine part of medical care.Talk to your provider about testing.

2. Get connected, get support! If you are living with HIV, find out about the programs and services offered in your area to help you stay healthy and support you and your family in living with your disease.

3. Educate yourself about HIV! Learn how to prevent HIV infection and how to keep yourself safe. Can you answer these questions about HIV?

True or false?

1. HIV is a virus and AIDS is a bacteria

2. HIV infection can be spread by hugging

3. Some people have HIV and do not know it

4. There is treatment for HIV

5. People who have HIV can give birth to healthy babies

Quiz answers

1.  HIV (human immunodeficiency virus) is a virus and AIDS (Acquired Immune Deficiency Syndrome) is the disease caused by the HIV virus. AIDS makes it hard for people to fight off other kinds of infections and illnesses and can make people sick.

2.  False! You cannot get HIV from hugging or playing with other people with HIV. HIV can only be spread by direct contact with blood and some other body fluids through sex, sharing needles, or breastfeeding.

3.  True. About 15 percent of people infected with HIV do not know they are infected with the virus. That’s why getting tested is so important!

4.  True! We have great treatments and medications for people living with HIV that enable them to stay healthy and live a very long time. We don’t have a cure yet, but scientists are hard at work on it.

5.  True! When people living with HIV take their medications and see their doctors regularly, they have over a 98 percent chance of having a baby born without HIV.

Live chat on bullying with the Star Tribune

 

It’s hard to go a day without reading or hearing about someone being bullied. Earlier this month, two young girls in Florida were arrested after allegedly harassing a classmate who ultimately committed suicide. The story made national headlines. 

It’s national bullying prevention month, and we can’t think of a better time to talk about this important issue. Join us and local experts on Monday, Oct. 28, at noon for an hour-long discussion on bullying. We’ll talk about defining bullying, the difference between bullying and healthy peer-to-peer conflict, signs a child may be involved in bullying, what parents can do when their child is bullying others and what kids and families can do to raise awareness.

To participate, visit the Star Tribune. You can also sign up for a reminder.

The following individuals will be on hand to answer your questions:

  • Dr. Mike Troy, Medical director, behavioral health services, Children’s Hospitals and Clinics of Minnesota
  • Kelly Wolfe, Senior advocacy and health policy specialist, Children’s Hospitals and Clinics of Minnesota
  • Julie Hertzog, Director, PACER’s National Bullying Prevention Center
  • Christina Wagner, high school student and activist

This summer, Children’s released a white paper on bullying.

When is it bullying?

Classroom bullyingIt’s bullying prevention month, so you may be hearing a lot about the problem of bullying and how to address it. But what exactly is bullying? It turns out that defining this problem is not as easy as it might seem.

Bullying, defined

Perhaps the most commonly used definition is one offered by Dan Olweus, a psychology professor from Norway and one of the world’s leading experts on the subject.

According to Olweus, “Bullying is when someone repeatedly and on purpose says or does mean or hurtful things to another person who has a hard time defending himself or herself.”1

The definition may not say it all

The Olweus definition is a sound starting point for discussions on bullying, but other experts have pointed out some grey areas that require attention when determining if a child is involved in bullying behavior:

  • On purpose or not? Some bullies may be too young to know exactly what they are doing and why. In such cases, the bullying may not be done “on purpose,” but it may be bullying nonetheless.
  • Was that a joke? A child may perceive a remark as “bullying” when it was intended to be a joke, especially in the case of cyberbullying, where there are no facial cues to help interpret the intention of the remark.
  • Who’s in charge? Sometimes bullying takes place between kids of equal standing, which may be especially common in cyberbullying.
  • Kids with mental health conditions. Children who suffer from pre-existing mental health issues, such as depression, or are used to being bullied, may be predisposed to assume a negative intent behind a comment or action that isn’t there.2

Normal conflict vs. bullying

Spectrum of conflict infrographic

Click image to view full-size version

Conflict is an inevitable part of human association and resolving conflict constructively, rather than destructively, is a critical skill set that children begin to develop even as infants. The infographic at right (click for a full size version) is a guide to help us consider whether a conflict has crossed into “bullying territory.”3

While parents and teachers can help children learn how to successfully resolve conflict, most children need to learn conflict resolution skills on their own through experience. Aside from problem-solving, one of the most critical conflict resolution skills is for children to know when they can resolve the conflict on their own and when they need help from others.4

Learning to use problem-solving skills to resolve conflict is associated with:

  • Increased achievement
  • Motivation to learn and improve
  • Higher-level reasoning
  • Healthy social and cognitive development
  • Enriched relationships
  • Clarified self-image
  • Increased self-confidence
  • Resilience in the face of adversity5

On the other hand, the inability to successfully resolve conflict often leads to aggression and violence.

How to tell the difference between bullying and healthy conflict

Drawing a distinction between bullying and day-to-day conflict isn’t always easy, said Emily P. Chapman, MD, medical director of Children’s Hospitals and Clinics of Minnesota hospitalist program.

“If a child teases a good buddy, it can be in fun,” Dr. Chapman said. “If trust isn’t there, it could be intimidating or alienating, and that is bullying. It’s also likely to be bullying if there is mismatched stature between the ‘teaser’ and the ‘teased’ — older versus younger, popular versus not so popular.”

“Learning how to handle and resolve conflict is important to a child’s psychosocial development,” Dr. Troy said. “If we as parents or other responsible adults constantly intervene to help resolve these conflicts, then we may hinder rather than help the children involved. Bullying is different — it is outside the normal range of conflict, and it can be very harmful if not stopped.”

For more tips on how to address bullying check out this blog entry, or visit our resources page at ChildrensMN.org/bullying.

Notes:

[1] The Olweus Bullying Prevention Program, U.S., 2011.

[2] Dempsey AG, Storch EA. Psychopathology and Health Problems Affecting Involvement in Bullying. Preventing and Treating Bullying and Victimization (2010), Oxford University Press: 107-131.

[3] Broadbear BC, Broadbear JT. Development of Conflict Resolution Skills in Infancy and Early Childhood. The International Electronic Journal of Health Education (2000);3(4):284-290.

[4] ibid.

[5] Johnson DW, Johnson R. Why violence prevention programs don’t work and what does. Educational Leadership (1995);52(5): 63-67.

MNsure: What you need to know

Family with health professionalOct. 1 marks the much anticipated launch of MNsure, the state’s new health insurance exchange. You may have recently seen ads and billboards featuring Paul Bunyon and Babe the Blue Ox talking about MNsure and encouraging Minnesotans to sign up for health insurance. That’s because under the Affordable Care Act (ACA), everyone is required to have healthcare insurance starting in 2014. Beginning Oct. 1, Minnesotans will have a new way to shop for health insurance coverage using MNsure, our state’s health insurance exchange.

So, what is MNsure? It’s an on online marketplace that you can use to compare plans and costs, enroll in public programs and purchase your own health insurance.

Who can use MNsure to buy policies? Individuals who don’t have health insurance, Medicaid recipients and small businesses with 50 or fewer employees can use MNsure.

How does this affect Children’s patient families?

  • If you currently have health insurance, you will likely see no change.
  • If you are enrolled in Medicaid already, you will be automatically transferred into the exchange for the first year. You will need to re-enroll for Medicaid through the exchange the second year.
  • If you do not have access to affordable coverage you can sign up for coverage through the exchange.
  • Enrollment begins Oct. 1, 2013 for coverage that takes effect on Jan. 1, 2014.
  • Low-cost plans, financial assistance and tax credits are available for those who qualify.
  • If you do not purchase health insurance you will be subject to a tax penalty.

Things to consider when picking your plan

  • Costs (premiums and out-of-pocket): MNsure users will be able to choose from a number of different plans: bronze, silver, gold or platinum. The various levels are based on the percentage of costs that the plans will cover. Be sure to pick a plan that works best for you and your family.
  • Access to health professionals: You will be able to look up your current pediatrician or provider on the MNsure website to ensure they participate in the plan you choose.

Children’s is here to help! Our financial counselors are being trained to help patients and families apply and enroll in health insurance through the exchange. They may also refer families to the MNsure Customer Service Center. Patient families can contact our financial counselors at the phone numbers listed below:

  • Minneapolis: 612-813-6432
  • St. Paul: 651-220-6367

The MNsure Customer Service Center: Customer contact specialists will be available to answer any questions online or through a toll-free number: 1-855-3-MNSURE (1-855-366-7873)

  • Monday – Friday: 7:30 a.m. – 8 p.m.
  • Saturday: 9 a.m. – 4:30 p.m.

Assistance will be available in English, Spanish, Hmong and Somali. Additional interpreter services are offered in more than 140 languages.

MNsure.org

You can also download and print a factsheet with this information.