Help Our Families By Sharing This Resource

A few weeks ago you received an e-mail from me sharing our effort to assist families choose the best insurance exchange for their child with special needs. Choosing an insurance plan is a daunting task, even more so for a parent with a child that requires multiple specialists, dozens of therapy visits and expensive adaptive equipment. And, with these new private or public exchanges, it’s a whole new ball game.

We worked with our Family Faculty, Family Advisory Committee, and a consultant to help us create an online tool that our families could use to assist them in making this important decision. With six easy steps, a comprehensive explanation, glossary of terms, printable forms, and personal stories from families that have learned from their own experiences – we have seen tremendous traffic to this site! 

In just about a month since we launched this tool, we have had over 3,000 visitors to the website. That’s just incredible, and really shows you how useful this tool is.

We have asked SPAN and other advocacy groups to share it with their constituents. The NJ Hospital Association has shared it with their members and NJBIZ did an article about the tool when we unveiled it. The Star Ledger has posted a story online, as well as in the paper yesterday.

New this week is a video that helps explain every aspect of the site, the key features, and why this is so important.

What I need is your help. You are the most trusted person in our families’ lives because you are an advocate for their children. Please help raise the awareness about this insurance tool; a few e-mails to contacts, a share on Facebook could go a long way to ensuring the children we treat have the best possible insurance coverage to reach their fullest potential.

Have you started the discussion with the families you treat about its benefit?

What should we discuss in our employee meetings?

Next week I start my twice-a-year employee meetings. This is an opportunity to open that line of communication with our senior leadership team and for us to really listen to what’s on your mind — your praises, your concerns, questions, and you all know how much I like a good rumor.

There are of course important topics we need to discuss – topics that are important for you to be aware of – to make these meetings truly beneficial for you, but we want to know what you want to talk about.

Is there something you heard through the grapevine that you’re curious about? A topic that you’ve wanted to discuss for some time now, but haven’t been given the opportunity? We want to know!

This blog has and always will be a vehicle for you to share your meeting input with me – and you can use your name or ask a question anonymously.

Please submit your questions or topics you want us to discuss during our employee meetings. We will do our best to include as many questions/topics as time allows.

Thank you in advance for all of your meeting input and efforts to improve our process. 

Technology allows our Docs to make house calls

You have heard me tell you that technology is revolutionizing how we will provide health care to our children. Children’s Specialized Hospital is fortunate to be the first pediatric rehabilitation hospital in the country to offer the telemedicine robot, VGo.

What is VGo? It’s a robot. A robot that uses HIPPA-secure technology to provide two-way video, audio and motor driven action. This is SO COOL! Thank you to Dr. Haines for being the driving force behind bringing VGo to our patients. 

Currently we are using VGo in two ways.We use VGo on our inpatient units where our doctors can sign on from their home computer and drive VGo around the unit to check in on patients and answer parent’s questions without physically being in the hospital.So Dr. Fantasia can sign on from her home computer without coming into the hospital.Talk about improving the patient experience – having a doctor available 24/7!

Now this is really great; we are currently sending home a VGo, with some of our infants and their parents, for the first week. For many of these patients this is their first time outside of a hospital setting and having access to the medical team that has helped them through what is probably one of the most challenging times in their lives is priceless. 

Dr. Burke and her team will schedule appointments to check in on the patient; with the home health nurse too. In a few cases, Dr. Burke has been able to avoid ED visits and readmissions because of these check-ins.One time, a baby’s trach came out during the visit and she was able to successfully talk the parent/nurse into reinserting it. 

Currently, we have two VGo robots in our New Brunswick site, as well as one at each of our LTC centers. But we hope to add more VGo robots to our inventory and help improve access to pediatric specialists and outpatient care to children living in medically underserved communities. 

Special thanks to Drs. Haines and Burke for being true champions of VGo and for embracing this new technology to its fullest. Thank you too to our facilities team who go to the ends of NJ to deliver our VGos, and bring them home. 

In the short time that we’ve been able to use these devices, VGo has offered endless opportunities to help our children in a way that we never thought was possible. Not only can our physicians check in on their patients at any point in the day from wherever they are, but we are now able to have our physicians consult with one another across our sites, right at the patient’s bed side by just dialing into the system from a computer or iPad.

We strive to help every child live in a world where they have every opportunity to reach their goals. Advances in technology, such as this, make it possible to save more lives and help our kids reach new heights.

I am excited to see the other opportunities the VGo system – or any other new form of technology – offers the children at Children’s Specialized Hospital.

Have you used the VGo system yet, or used any other form of telemedicine to help improve patient care? Do you have any idea on how we can use our VGos? I’d love to hear your thoughts.

Elevating the Patient Experience

This week, the Family Advisory Council is going to serve as our testers for the new patient portal. I will post about the patient portal on this blog when we are closer to “going live,” but I wanted to dedicate this post to the team that has been working on this effort.

Chuck Chianese (VP, Operations & Chief Performance Officer) has led the group which includes Darlene Carr (Applications Manager/NB), Pat DeMartino (Chief Information Officer), Janice Kelly (Director of Marketing/Mtnside), Haig Minassian (Systems Analyst/NB), Pat Newsome (Director of Patient Accounting/Fanwood), Jana Prokop (Sr. Strategic Improvement Systems Analyst/TR), Donna Provenzano (Director of Family Centered Care/NB), Carrie Snyder (Family Faculty [PD]/NB), and Linda Waddell (Family Faculty [PD]/Mtnside).

So much of what drove the content of this portal came directly from feedback from our families. We wanted a way to respond directly to their concerns and their struggles in regards to the interactions with our hospital. Items such as  making the bills more understandable, being able to print the evaluations rather than calling HIMS for copies, being able to cancel appointments online, and eventually being able to schedule themselves!

The tasks the families will be able to complete in the patient portal will save them time as well as our staff who have to trouble shoot these issues.

There may be bumps in the road as we roll this program out in its entirety, but I am so very proud of the partnership and teamwork that has gone into this effort. 

A negative perception turned to a raving review

A few years ago, a family member of one of our inpatients published a blog about their experience at one of our locations and their negative perceptions of Children’s Specialized Hospital.

People who had come across the post via social media were commenting on the post and sharing it; some were responding sympathetically while others were making assumptions about our hospital and the services we provide.

After discussing a plan of action with a team of folks, I posted a comment on their blog post apologizing for their negative experience and offering to make myself immediately available to resolve any of their concerns.

In a conversation with the family, they provided us with some suggestions on what we could improve upon to avoid this situation in the future, one of which was more training around communication.

When I went to find the blog post it had been deleted, but you can imagine the impact it had on those who provided care to this child and their family. We continued to provide amazing care to the child and worked diligently to ensure our hurt was not placed on the child in any way. We had an obligation to the child to do our best, as we always do.

Fast forward 7 years, I receive an e-mail from Pat O’Hanlon, of our Family Faculty, to share that she saw the family in New Brunswick for an outpatient session. While the child was being seen, Mom was raving about how wonderful the care is that she is receiving. You can imagine the excitement in Pat’s e-mail when she told me this. It was such a positive conversation coming from a family that had previously had such a negative experience.

We listened to the suggestions for improvement that all our families shared with us and incorporated them into our Service Excellence Training, a philosophy to engage and empower every staff member to consistently deliver an exceptional experience with every interaction.

Two of our Service Excellence Standards are, “I will follow through to make sure that questions and concerns are addressed and results are communicated” and “I resolve concerns respectfully and directly with the person involved.”

By listening to the concerns from this family and addressing them we were able to provide continued care for the child, build a relationship with the patient and the family, and change their perception of Children’s Specialized.

This example is just one of the many that make us different. Great work to all who was involved.

Do you have any examples of how you practiced service recovery and changed a parent’s experience and perception of Children’s Specialized?

Halloween Fun at Children’s Specialized Hospital: A tradition!

Halloween at Children’s Specialized Hospital is truly our biggest holiday of the year. Each of our sites celebrates the holiday in a different way.

For example, our Children’s Specialized team in Toms River takes the children (weather permitting) to a community across the street to trick-or-treat. In both Mountainside and New Brunswick, the children are taken through the hospital to trick-or-treat with the staff.

These efforts take a HUGE amount of work soliciting costumes for all the kids, matching the costumes with the right child, getting each child dressed, and then of course the trick-or-treating. So many wonderful things come together during Halloween; employees coming together to add fun and joy to the lives of children, involving volunteers in the activities, and of course the fun of the costumes. 

We never forget to have FUN at work on Halloween as our staff dresses up each year. Some departments dress up together – I’ve seen minions, the Wizard of Oz, superheroes, fairies, and a few years ago Trish West-Low even dressed up as me! It was hysterical! 

So as we gear up for this holiday, I want to thank you for all you do each and every day for our kids. I look forward to seeing all of the children in their costumes (and yours too of course)!

Please be sure to share your pictures to Megan Muller (memuller@childrens-specialized.org) and we will compile them to share internally and on social media.

This was my FIRST Halloween at Children's Specialized!

Happy Halloween!

Local mom proves we have work to do

There has been a local story in Westfield that has gone viral and gotten a lot of media attention. It involves a young boy with Down syndrome and a local, popular gymnastics studio. 

A mother from Cranford reached out to the gymnastics studio to host her son’s fifth birthday party. After successfully reserving the date for the party, mom went to the location to process the contract paperwork and leave the deposit for the party. 

In reading over the contract for the party reservation, she noticed the document stated “no special needs children will be accommodated or can participate.” In further investigating, she learned the reason for this exclusion was because the owner did not have anyone on staff appropriately credentialed in caring for children with special needs; the insurance company wouldn’t write the insurance. 

The mother was outraged, angry, shocked.   

The business decision was made that the expense of having someone with that expertise was not affordable in this business. And while you may be outraged about that, I want to ask you, to hold that thought for a moment, while I tell you the rest of this story. 

We work so hard to show children with special needs that they can accomplish anything, with accommodations, discouraging them from accepting defeat and encouraging them to continue to work hard. 

On any given day, Children’s Specialized also offers services and resources to all families of children with special needs, including how to have fun at community activities. For example, the Kohl’s Autism Awareness Hub is a tremendous source of information, not only for children with autism and their families, but the information can pertain to any child with special needs and their family.

Within The Hub, families can visit resources such as Make Friends With Autism, Friends Like You. Friends Like Me., Autism and Safety, and Real Life Tips. Each section contains fact and tip sheets, educational videos, workbooks, and more to share information about autism and how to understand a child with autism and their needs.

More specifically, The Hub links to a Recreation Center on its map where professionals, service providers, and members of the community can find valuable information on how to graciously accept and support children with special needs into their programs, businesses, recreational activities, and more. Although our Kohl’s Hub focuses primarily on children with autism, this information can very easily be translated into any special needs situation. 

The power of social media is astounding. This mom shared her disappointment on the gymnastic studio’s Facebook page and nearly immediately her post caught attention. She said at least eight other people shared with her that they too were denied access to the gym for the same reason. 

Since her story was shared, the mom has been notified by the owner of the gymnastic studio to update her on their plan of action to better accommodate children with special needs. The company has since made a business decision to hire an individual with expertise in working with children with special needs to educate the staff – fixing the issue on staff training – and will be changing their policy moving forward.   

And I'm happy to say that with the generosity of over a dozen community businesses, this little boy had a wonderful birthday, surrounded by family and friends. A birthday worth remembering.

In hearing this story it made me ask myself a question about our “business” decisions. How many times do we turn kids away because we don’t treat “those” kids with severe mental health issues or suicidal tendencies? We have said, “We don’t have the expertise and we need to ensure that kids who need that type of care get to people most expert in delivering that care.” 

That is the same thing the owner of the gymnastics studio said. And just like that studio owner, we are doing what we think is the right thing, to ensure that children get to the right level of care. But these are not easy decisions. The public pressure made this business owner make other decisions. 

As I thought about this, I wondered what we would do if the tables were turned. I would love to hear your thoughts on how we should ponder these decisions.