Category Archives: Advocacy and Health Policy

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.

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.

Recap: Our discussion with Emily Bazelon on bullying

Emily Bazelon takes on the topic of bullying.

We read and hear about bullying in the news daily. But, what is bullying, exactly? Is it conflict? Picking on someone?

Emily Bazelon, a New York Times best-selling author of “Sticks and Stones: Defeating the Culture of Bullying and Rediscovering the Power of Character and Empathy” and Slate contributor, defines it as verbal or physical aggression that is repeated over time and involves a power imbalance.

Bazelon addressed approximately 130 health professionals, lawmakers, researchers and educators at the Minnesota Children’s Museum on Sept. 11. The event built upon work Children’s Hospitals and Clinics of Minnesota has done around bullying, including a report released earlier this summer: “Understanding the threat of bullying.”

Here are some noteworthy messages from the evening:

  • Social media is a vehicle for bullying. But if it’s happening online, it’s probably happening offline, too.
  • For the target of an online bully: The Internet makes it feel like bullying is happening 24/7. It’s permanent and visible, and it can potentially reach a bigger audience.
  • For the online bully: He or she doesn’t have to look the target in the eye, there’s no face-to-face feedback and it can be anonymous.
  • We spend little time talking about whether social media companies need to play a role. That needs to change.
  • We need to send the message to kids that bullying isn’t normal behavior, and it’s not something everyone does.
  • Bystanders who watch bullying often have the most power to stop it. Bystander kids intervene about 20 percent of time.
  • A message for kid bystanders: You don’t have to be a hero. A thoughtful or empathetic message like “Are you OK?” can be helpful.
  • What do we do about bullying? Bazelon emphasizes prevention and intervention, which can’t be done in a day. We need to help shape who kids are.

Read more about bullying and how one local family overcame it.

 

Being bullied: One family’s story

Kelly was bullied every day. First on the school bus. Then in her classroom. She was called “every name in the book.”

It went on for months, and her parents never knew.

Then, one day the bullying turned physically violent. Kelly was sitting quietly at her desk, her mom Lynn Miland described, when a student began repeatedly hitting her in the head. A teacher had to remove the student.

“I felt helpless to protect my daughter,” Miland said.

While Kelly had been bullied previously for months and months, it escalated when she moved to high school, Miland said. Transitioning from one school to another is a common time for kids to be bullied. And Kelly, on the autism spectrum, was an easy target.

“It can be hard to be different in any way especially during the early teen years,” said Dr. Michael Troy, Medical Director of Behavioral Health Services at Children’s Hospitals and Clinics of Minnesota.

While anyone can be bullied, targets of bullying have some common traits, including being different in behavior. Children who act differently due to developmental problems, psychological conditions, behavior disorders or aggressive medical treatment can be targets.

During early adolescence, anything that makes a child different from most of his or her peers is potentially problematic, even positive differences like being tall or smart, or having a musical talent, Troy said.

But, it’s especially hard for children with physical or mental differences who can’t modify them, he said.

As an adolescent, learning to negotiate the social world is a key developmental task. Something like autism spectrum disorder can make social communication difficult, Troy said. Consequently, since this is a time when the demand is greatest to learn and use social skills, it can also be a time that kids on this spectrum can be especially vulnerable to bullying.

Additionally, other kids who may be feeling insecure about their own social status, may resort to teasing or bullying peers they see as more vulnerable in an attempt to protect their own fragile self-esteem, Troy said.

When Kelly was initially bullied, her teacher told her to ignore it, Miland said. Kelly took this suggestion quite literally and didn’t say anything to anyone, even as the bullying continued to escalate.

“Never should a student who is being bullied be left to resolve a bullying situation. It’s really about an imbalance of power. If the adults don’t step in, it can really escalate,” Miland said.

After the incident and talking with school authorities, she reassured her daughter she wouldn’t be bullied again. But, when Kelly’s bus arrived near their home, it carried the same student who had been bullying Kelly for months.

That was a red flag, Miland said.

Miland turned to the PACER Center for help. The Minneapolis-based nonprofit had recently launched its National Bullying Prevention Center (PACER.org/bullying), which offers a variety of web-based resources for parents, students, and educators to deal with bullying situations.

“I was very grateful for the help I received because at that point, I didn’t know want to do,” she said of PACER, which she later joined as a parent advocate.

She then requested a meeting with school leaders to determine ways to keep her daughter safe.

“Fortunately, the school responded in a very positive way,” she said.

School leaders and Miland made sure Kelly wasn’t alone and established positive relationships with peers and school staff she could go to and trust if she felt unsafe. They also looked out for her.

To help Kelly adjust to returning to school, Miland gave her a note card with something positive written on it every day. The card also included names of people she could talk to in times of need.

Years have passed since the incident, but Kelly still remembers what she wore the day it happened.

When there’s an upsetting and unhappy memory, the more a child’s life is filled with rewarding social experiences, the less central the painful memory becomes by comparison, Troy said. 

“It’s something that’s etched in her mind always,” Miland said. “It’s something she won’t forget, but it’s something she has overcome.”

Miland’s advice for other parents:

  • If you notice a change in behavior, talk to your child. Kelly stopped wanting to go to school and wouldn’t say why she became isolated. That was a red flag.
  • Talk to your child about what bullying is and, if it’s happening to them, give them strategies so they can talk to parents, teachers and other adults.
  • Parents should report bullying to the proper authorities and put it in writing so there’s an investigation and follow-up. The report should include the name of the bully, when and where the incident occurred and any bystanders who may have been present. If cyber bullying occurred, include the information in the report.
  • Work with the proper authorities so there’s a plan for the child to feel safe. 

Check out Children’s newly released report on bullying, which includes a guide for parents. For more tips on bullying prevention, visit PACER.org/bullying.

Having a voice at Children’s

Eleanor Christiansen and her husband Tyler got an unexpected crash course in hospital life. 

Their usually healthy daughter, Greta, had few reasons to go to the doctor. Then, in January 2010, she developed croup and landed in the Emergency Department on the Minneapolis campus of Children’s Hospitals and Clinics of Minnesota.

Croup became secondary pneumonia. The ventilator became ECMO, which acts as a replacement for a child’s heart and lungs. An emergency visit became a nearly month-long stay in the hospital, with two-and-a-half weeks in the pediatric intensive care unit (PICU).

“Had she been somewhere else in the state, somewhere else in the country, there was a really good chance we would have lost our child,” Christiansen said. “We have this well of gratitude that we’ll always be able to tap and will probably never run out.”

Christiansen is about to begin her third year on the Family Advisory Council – showing her gratitude in a big way. The council comprises families whose children are past or current patients at Children’s. The group meets once a month for two hours for 10 months of the year.

Its members draw from their own experiences to make those for other families even better. The council recently created a resource guide for families. They’re currently working on a project to help families, especially with those who have special needs and may have equipment, access the hospital more easily.

“We provide a voice that nobody at the hospital can provide and be a real powerhouse of change,” Christiansen said.

Every member’s experience – the good and the bad – is important to the council, Christiansen said. And every story is important, too.

Stories like those of Michelle and Chris Jackman. Their daughter Samantha was born at 24 weeks gestation weighing a little over 1 pound and spent 128 days in the neonatal intensive care unit (NICU).

She quit her job to stay home and care for Samantha and during that time joined the NICU experience team in St. Paul. When she transitioned off the team, she joined the council.

“I wanted my experience and my knowledge to have some meaning and to have value,” Jackman said. “One of the things I’ve just loved about Children’s is that they’ve allowed me to find that value in that experience I had.”

Not every experience during their four-month stay at Children’s was a good one, Jackman said. But for every negative experience, there was a positive one, she said.

“I realize how fortunate I am on a million different levels. How fortunate I am in my personal experience. How fortunate I am to have a place like Children’s to bring my child,” Jackman said. 

Today, not only does she feel like she gets to help Children’s, she is grateful for the opportunity to share her story with others.

“Personally I wouldn’t be involved with the Family Advisory Council if I didn’t believe Children’s values the opinions and the work we do,” Jackman said. “I’m here because I know that they really value what we say and what we do, and we do have an impact.”

Interested in making an impact at Children’s, too? Please contact Tessa Billman, patient-family centered care coordinator, at 612-813-7407 today.