Our Law to Fund Recovery Programs Signed by Gov. Pence!

Today Senate Act 166, an Indiana state law to help fund long-term physical therapy programs was signed into law by Governor Pence.   It's a special day for NeuroHope, and for all the clients we will serve, because it was written specifically with our mission in mind.

For the last seven months we've worked closely with key state legislators (Sen. Patricia Miller, Sen. Luke Kenley, Rep. David Frizzell, Rep. Cindy Kirchhofer and others) to raise awareness to the glaring void in care for people recovering from traumatic injury.  There are too many families thrown into the world of spinal cord or brain injury who soon realize that the time available for their recovery is severely limited.  Many will be discharged from inpatient rehabilitation after a matter of weeks, with only a small number of outpatiet visits available for the rest of their recovery.

miller chairWe first approached Senator Miller, chair of the Senate Health Committee, last fall to share my story and the vision we had for NeuroHope.  Back in 2007, Senator Miller helped create the Indiana Spinal Cord and Brain Injury Research Fund.  This is a wonderful fund that proves Indiana is already at the forefront of a changing paradigm of neurologic research and rehabilitation.  Every year, the fund receives about 1.5 million dollars from statewide motor vehicle registrations.  Every two years, the legislature decides the allowance.  Previously, this money was only permitted to be used for research purposes.  Last year for example, 9 researchers received grants for various projects around the state.  One in particular is a very worthwhile study at the Rehabilitation Hospital of Indiana researching diabetes and neurologic injury.  This is great work that will continue, but Senator Miller felt that more could be done with the fund.  She quickly became our leading advocate and introduced the bill that we've helped shepherd through the entire legislative process.   She proposed that a portion of the fund, in addition to it's use for research,  be used for the long-term treatment of neurologic injury.  Specifically, for a clinic that offers extended services at affordable rates after insurance expires – the crux of our mission at NeuroHope.

In January and in March I gave detailed presentations to the Health Committees of both the Indiana House of Representatives and the Senate.  You can read my testimony here.   I explained the compexities of neurologic injury, and how care is limited to the amount dictacted by insurance companies.  I also discussed how an independent organization like NeuroHope, that is willing to provide services outside the boundaries of traditional facilities, will help fill the void in care in Indiana.

Our mesage was clear and our message was heard!  The bill passed each bipartisan committee unopposed. It passed the Senate 47-0.  It passed the House of Representatives 95-0.  Throughout its journey the bill never received a single vote of opposition, and was signed into law by the Governor in April.

What it Means

  • A portion of the money in the Indiana Spinal Cord Injury and Brain Injury Fund must now be granted to a facility that offers: "post-acute extended physical therapy services for individuals with spinal cord and brain injuries at affordable rates".
  • An annual amount of 10{d57c75664ee40cd9f9f9d2c854d19b920dafc77e6732c691aa0b0118029496b3}-15{d57c75664ee40cd9f9f9d2c854d19b920dafc77e6732c691aa0b0118029496b3} of the fund (approximately $150,000 – $225,000) must now be used for this purpose.
  • The 11 member Indiana Spinal Cord and Brain Injury Research Board approves funding.
  • This opportunity WILL NOT fully fund NeuroHope!  It is simply a fund which we are eligible to apply to for assistance each year.

Our model of service revolves around providing supplemental care for the patients that need it.  That means longer therapy visitis, and more therapy visits.  In order to do this, NeuroHope needs income outside of insurance reimbursement to offset the true cost of therapy. 

As a non-profit, much of our success will always rely on fundraising.  Searching for grants, organizing charitable events, and seeking out individual donors (however large or small), will always play an integral part of our sustainability.  The new law now provides another potential revenue stream. 

It's not often that a grassroots organization like ours is able to help pass a law in a single legislative session.  This would not have been possible without DPT Nora Foster leading our services.  Nora has turned the idea of NeuroHope into reality.   Because of her exceptional standard of care, we have opened our doors to the spinal cord injured community, and have added Donna Peterson (PTA) to our team.  We already have a waitlist for their services.

This law will not fully fund NeuroHope!  Even if we are successful in securing money from the fund, it will not be available until next year. 

Nevertheless this is an important milestone for the healthcare system and for disabled individuals in Indiana and we are honored to be a part of it.

 

Save the Date: Open House July 15!

It has been a thrilling 2015 at NeuroHope!  Without the financial support of our donors, and the interest many of you have displayed over the last year, we would not be where we are today.  Together, we are creating an unmatched standard of care for disabled individuals in Indiana and we have YOU to thank!

To show our appreciation, we are hosting a catered open house on Wednesday July 15!

This is a chance for our supporters to visit the clinic, enjoy a some dinner (Sushi Boss, Iaria's, B's Po Boy, Pizza King), meet our staff and clients, and kick around ideas to help expand the NeuroHope mission moving forward. Hopefully, you have been following our updates on Facebook and Twitter. Here is a rundown:

  • First three months of successful operation in the books
  • Serving 14 clients, totaling more than 150 visits in this short period of time
  • Hired Donna Peterson (PTA) to help Nora treat clients
  • Secured volunteer help from students at the University of Indianapolis Krannert School of Physical Therapy 
  • Featured in the March 14 edition of the Indianapolis Business Journal: http://www.ibj.com/articles/52237-injured-diver-starts-clinic-that-fills-void-in-therapy?
  • Had a robotic exoskeleton in the clinic that one of our clients had the unique chance to try. Innovative technology and an inspiring moment! Video and blog: https://www.neurohopewellness.org/945
  • Since December, we’ve worked closely with key Indiana legislators and have spearheaded an effort that was signed into law by Gov. Pence on May 5th.  Beginning next year, physical therapy clinics that provide affordable extended care may seek funding from the Indiana Spinal Cord and Traumatic Brain Injury Fund.

RandyEasyStandNeuroHope has reached a new milestone. We have a waitlist of clients. The need for long-term rehabilitation and wellness for individuals living with traumatic injury is significant, and the demand isMacy_Stand real. Now, we need to secure additional funding to expand our hours of operation past 3 days per week, hire another therapist, and keep our momentum STRONG so that our application for funding from the new law in 2016 is well received.
On July 15th, we will be explaining our goals and sharing an outreach letter (download it here).  This is a brief letter that we hope each of of our supporters will share with at least 10 people or groups in their network (friends, family, church, social club, etc.) There are likely individuals YOU know that will be moved or affected by our mission.  Let’s find them!

We would love to see you on July 15! If you are able to attend please RSVP (HERE!)

Come hungry! Food has been generously provided by: Sushi Boss, Iaria's, B's Po Boy, and Pizza King!

What: NeuroHope Open House

When: Wednesday, July 15th 6:00p – 8:00p

Where: 901 Shelby Street –  Southeast Community Services Building (2nd Floor)

NeuroHope in the Press: Feature in IBJ

Last month, we welcomed Indianapolis Business Journal (IBJ) Healthcare reporter J.K. Wall to NeuroHope.   He and a photographer dropped by on a bustling Wednesday to learn about the vision we have for our clinic, and to chat with some of our clients as they worked their tails off in therapy.

The result: A fantastic front page article in the March 15 edition!  Wall eloquently explains the void in therapy in central Indiana, and the model behind how we are changing the paradigm for longer rehab visits, and affordable access.

You can read the article here!

We would like to give a big thanks to J.K. Wall for his visit, and to our awesome clients Randy, Brad, and Ariane for sharing their recovery stories.

 

 

 

NeuroHope Bill to Fund Recovery Programs Passes Senate

 

In the months since our campaign for NeuroHope was launched, we've been turning heads locally about the need to address long-term treatment and wellness programs for people recovering from and living with traumatic injury in Indiana. I've shared our vision with healthcare executives, insurance leaders, politicians, and media outlets in an effort to help change the paradigm of neurologic recovery in the state.

miller chairOne of the individuals who has taken our story to heart is Senator Pat Miller (R-Indianapolis), who also chairs the bipartisan Senate Health and Service Providers Committee. We've been working closely with Senator Miller in an effort to amend a law, that if successful, can help fund specialized programs that offer long-term, activity-based therapy and wellness services. Indiana has a fantastic law already in place that helps fund neurologic resesarch. This amendment would let specialized programs be eligible to apply for grants from the exisiting fund as well.chris5

On Wednesday, I testified before the committee at the Indiana State Capitol. I shared my story, explained the void in care, and described how this bill has the potential to enhance the research it already funds and change the lives of those living with paralysis in the process.

IMG_2085The bill passed committee 11-0, and now will move to the Senate floor. First hurdle cleared!

UPDATE: On January 29th, the bill passed the Indiana Senate a resounding 47-0!  A clean bipartisan sweep!  This brings us halfway home.  In March, it will move to a committe for approval to send to the House of Representatives.

My testimony is posted below. The first half tells my personal recovery story, the second half explains the the potential of the bill.

Four and a half years ago I broke my neck in an accident and suffered a spinal cord injury that left me completely paralyzed from the neck down.  It may come as a surprise as you see me walk into this room, but after my accident doctors weren’t sure if I would ever re-gain any movement.  They prepared my family and me for the scenario that I might be a total quadriplegic for the rest of my life.

Initially (as I was going into surgery and trying to process that I was paralyzed) the only glimmer of comfort that I had, was knowing that I would receive the best standard of care.  Between Methodist, IU-Health, the Rehabilitation Hospital of Indiana, and other hospitals, there are many fine facilities here in Indianapolis.  But, it soon became apparent that in spite of the care these facilities provide in the early stages of traumatic injury, there is a HUGE void they are unable to fill AFTER discharge, which often comes after a matter of weeks.  Insurance runs out quickly, no matter how great the plan.

I was discharged from the Rehabilitation Hospital of Indiana after 8 weeks.  I fought for and received two extra weeks due to the severity of my injury, and the early progress I was showing.   But, at discharge I was still completely paralyzed except for small movements in my fingers and right foot, and I left the hospital on a stretcher.  Many bodily-functions were not intact.  I didn’t have the ability to feed or bath myself.  I was still completely caregiver dependent.   Leaving the rehab hospital meant the daily physical and occupational therapy I had been receiving, and desperately needed to continue, had to stop.   I remember that being the single most devastating blow for me.  Incredibly, insurance would pay for a $50,000 blow-powered wheelchair, but extended therapy was denied.  All I could do was return for a limited number of outpatient therapy visits a few times per week, a total of 30, before they too expired.  I went to a nursing home instead.

My situation is not unique.  This is the way it is for everyone recovering from traumatic injury.  Neurologic injury takes months and sometimes years of intense rehabilitation to maximize recovery and a lifetime of maintenance.

Six months after my accident – still wheelchair bound – I was fortunate to travel to a specialty outpatient clinic in Utah formed precisely to help fill this need.   This facility not only provided long-term access to rehabilitation, but also had specialized resources and equipment for neurologic recovery that was not offered anywhere in Indiana.  My mother (who was my caregiver) and I were able to stay in a small apartment in Salt Lake City for nearly 2 years.  I spent 3 to 4 hours in rehab everyday, until I recovered to the point where I am today.  

Everyone will not be as fortunate in recovery as I was. Every spinal cord or brain injury is different.  But, everyone needs continued care after inpatient and outpatient visits expire.

Now, I’ve organized NeuroHope of Indiana, a 501 © 3 public charity dedicated to bring this patient-centric standard of care to Indiana, and to help put more injured individuals on a path toward recovery, independence, and a return to the workforce.

Senator Miller’s bill speaks to a very good law already in place in Indiana, and has the potential to greatly ENHANCE the research that it already funds. 

The current law regulates the Indiana Spinal Cord and Brain Injury Research Fund that was established in 2007.  This fund is a godsend.  The fact that our state recognizes the importance of addressing traumatic injury puts Indiana ahead of many others in a changing paradigm of neurologic research and recovery.

The fund receives about 1.5 million dollars per year from vehicle registrations.  Under the current law, this money can only be used for research purposes. Last year 9 researchers received grants for various projects, and this incredible work needs to continue.  Unused money in the fund rolls over to the next year. There is currently more than 4.5 million dollars available in the fund.  Senator Miller’s bill will continue to fund research programs.  However, it will also allow the board that administers the fund to consider grants for specialized long-term therapy PROGRAMS. 

These programs will INCREASE clinical research opportunities by potentially providing an ENVIRONMENT for research to take place, while treating patients in the process.  A sandbox can be created for educators, students and researchers.

The current 9-member board has been an outstanding steward of the fund.  They are experienced and well qualified to evaluate the grant applications to ensure that good stewardship continues.  The language in this bill helps ensure that only specialized programs would be eligible for application.

It’s an exciting time in neurologic research.  The last 12 months have seen breakthroughs in laboratories and therapy gyms around the world, and medical organizations are aggressively seeking funds to continue research that they hope may bring them closer to a cure.   Directly linked to that research is the need for an incredible amount of rehabilitative therapy that in the current health care system is difficult to receive.

The packets you have been provided show a model of this changing paradigm in neurologic recovery.  Today’s current model consists of only two stages: Inpatient stay followed by limited outpatient visits.  That’s it. 

The continuum of care should involve a 4-stage process.  We need a 3rd stage of extended rehabilitation and activity-based therapy that focuses on re-educating the nervous system, and we need a 4th stage of long-term health and wellness that is critically important for those of us living with disabilities.  This is an element that is just as important as the recovery stage, and cannot be overlooked.  Individuals less fortunate in their recovery need wellness programs in place to maintain their bodies and all the complications that come hand-in-hand with paralysis.  They need to prevent pressure sores, maintain muscle and bone integrity, and more, to promote their quality of life and keep them out of the health care system.  Programs like this are working in other communities – I’ve toured and met with the leaders of 7 of them – and they will work here as well.

Also in the packet, you will find the most recent report of the Indiana SCI and Brain Injury Fund and a description of the program.

Finally, the packet includes a report from the Utah Department of Health that shows the potential positive impact of this bill.  The state of Utah has set up a similar fund for therapy and treatment and has had great success in returning individuals to work and school, and improving their overall quality of life.   Some of the grants went to the unique facility that I attended, and to which I owe so much of my recovery.

The future of neurologic recovery relies on innovate research AND long-term programs for individuals outside the boundaries of traditional care.   This bill will put the board in position to address both.

 

 

NuStep Recumbent Trainer Donated to NeuroHope

We began a crowdfunding campaign in August to help raise start-up costs for NeuroHope. The first equipment piece on our wish list, a piece that Nora and I consider an integral part of any rehabilitation and wellness clinic, was a NuStep recumbent cross trainer. Now, we are thrilled to announce that our first machine has been generously donated by NuStep!

I reached out to NuStep VP of Sales and Marketing Steve Sarns shortly after we launched the campaign and told him my story.  I explained what we are building in Indiana, and let him know the role NuStep had throughout my personal recovery. A NuStep was the first piece of equipment I could power (ever so slightly) on my own after total paralysis. Over the course of two years, from nursing home to rehabilitation clinic, a NuStep remained part of my daily therapy as I recovered movement and built strength and endurance.

Last month Steve welcomed me to NuStep headquarters in Ann Arbor, Michigan to tour the facility. I was blown away. Not just by the campus, factory, and facility (which was much larger and structured than I imagined), but by the entire staff. This is a team that is proud of what they have created and is genuine in their mission.

photo-2Steve’s father Dick Sarns founded NuStep in 1987, but the idea was born in the 1960’s when Dick began to research exercise products for people in cardiac rehabilitation. He wanted to create an easily accessible recumbent bike-style machine that could provide a safe and effective workout for people of all ability levels. The bicycle seat and pedals, however, were a problem; they were transformed to a chair with a stepping motion. Upper and lower body movements were connected to move in a reciprocal pattern, and NuStep was born. Over the last 20 years the machine has evolved and the company has grown. Every machine is made and shipped from their Ann Arbor campus. Sarns says around 40 new machines are built and shipped around the world each day.

photo-1The NuStep is not built specifically for people living with spinal cord injury. But, what makes the machine special is the accessibility it provides for people recovering from and living with varying degrees of disability. In rehabilitation a NuStep can serve as a therapy tool that some patients may benefit from early in their recovery. Incomplete spinal cord injuries need every opportunity to get their bodies moving. They must spend every moment they can sending signals through their healing central nervous system to promote as much neuroplastic gain as possible. One of the most memorable milestones in my recovery, on par with the moment I took my first step, was the first time I used a NuStep.

The first few months of therapy after my accident consisted mostly of range of motion exercises and assisted movement from therapists. That was the extent of my abilities as a quadriplegic with only trace amounts of movement from the neck down. After three months, however, movement had faintly returned to portions of my legs, and my body had finally regained the ability to better regulate blood pressure. I still lacked the ability to sit upright on my own, but my body could finally tolerate being in an upright position without passing out. My arms were still paralyzed but my therapist thought my legs might be strong enough to give the NuStep a try. She transferred me to the seat, put my legs and hands in place, and there I sat – in a machine and on my own for the first since my accident. It took a few seconds, but the pedals budged and soon all four limbs were gliding to the movement my legs provided.

It was the first moment I no longer felt completely paralyzed. I was barely moving the machine at the lowest setting, but I was moving it. It rejuvenated me. It gave me new goals to focus on and served as the impetus to the next level of my rehabilitation.

My unique experience aside, the main benefit of these machines is their role in wellness. They were built to provide people of all ability levels a way to achieve a low impact, full body-work out. It is just as important for people with spinal cord injures to remain healthy through exercise as it is for the able-bodied population. No matter the level of motor return, all spinal cord injuries require an incredible amount of daily maintenance. A NuStep is an elliptical machine or treadmill for the disabled. The motion loosens muscles, alleviates spasticity, improves circulation, prevents pressure sores and promotes overall health. The machine has adaptations that can be easily added for individuals lacking leg or hand function, making a full cardio workout possible for nearly all injury levels.

We plan to have our NuStep available when NeuroHope opens this winter. Whether it be for open-gym wellness purposes, or as a warm-up before a therapy session, we are excited to have the addition. I can’t thank the Sarns family and the NuStep team enough. It is an incredible gesture from a company making a difference in the lives of their clients.

We hope this NuStep will be the first of several for our facility.

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NeuroHope Featured on ‘Inside Indiana Business’

NeuroHope was proud to be featured on Inside Indiana Business with Gerry Dick last week!

A huge thanks goes to IIB's Health reporter Barbara Lewis for having me in the studio to spread the word about our mission of bringing the first extended rehabilitation and wellness center to Indiana.  I was able to briefly share my journey back from total paralysis, explain what we are creating in Indianapolis, and promote our crowdfunding campaign that is currently underway.

Inside In - makin pointThe program aired in Indianapolis on WFYI (PBS) and WTHR (NBC), and on affiliates around the state all weekend.

To watch the segment, click here.  (You will find the NeuroHope thumbnail on the right of the screen)

NeuroHope Shadowing Neuroworx this Week!

NeuroHope's DPT Nora Foster and I are visting Neuroworx in South Jordan, Utah this week. Be sure to "like" NeuroHope on Facebook, and follow us on twitter for pictures and updates! (link on the homepage)

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Neuroworx co-founders Dr. Dale Hull and DPT Jan Black were kind enough to let Nora shadow their operations this week. It is an awesome opportunity to learn from the best. Neuroworx has been the inspiration for creating NeuroHope. I came to Neuroworx 6 months after my injury, still wheelchair bound, and spent a year and a half in therapy there. I left my wheelchair behind when I came home in 2012.

Visit their website at: www.neuroworx.org to see what they have created in Utah. I view Neuroworx as the gold standard in SCI recovery. They are changing the paradigm in outpatient rehabilitation through aggressive, activity-based therapy, and long term access.

 

You can't recover from spinal cord injury in 8 weeks. They get it. We get it. Let's bring this quality of care to Indiana as well.

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We have a long way to go in our fundraising campaign, please help to spread the word. All donations help!

Whether it is a $10 contribution and a retweet to help our viral campaign, or a connection to a major donor or corporate sponsor – Everything helps!

We'll get there – Visit our campaign below!

 

 

Crowdfunding and Video now Live!

It is official!  Fundraising for NeuroHope has begun!

We unveiled our promotional video and launched our capital campaign yesterday with great results: $3,000 of our initial $125,000 was raised on Day 1.  Thanks to all who showed support right out of the gate.  Early momentum is critically important in crowdfunding. 

We have a long way to go.  Let's get this going and spread the word!  Please copy and paste the crowdfunding link in your Facebook status updates, tweets, LinkedIn feeds, and email everyone you know!

I'm extremely proud of the way the video turned out.  This was 10 months in the making.  Frazier Rehabilitation Institute in Louisville was kind enough to let us take cameras into their facility to show Locomotor Training, FES access, individual workouts and more.  Soon, we will have the same tools in Indianapolis.

A special thanks goes to Dr. Susan Harkema of the Reeve Foundation NeuroRecovery Network for taking the time to chat during our visit, and the awesome traniers and clients that were willing to be featured in the video.  Additionally, a HUGE thank-you to Invention Pictures in Indianapolis, and the outstanding post-production work of my good friends Mike Sparks and Jeremy Weinstein.

Watch the video and learn about our crowdfunding campaign below.

 

 

 

NeuroHope to Open in Fountain Square

Happy to announce that NeuroHope will have a future home at the Sutphin Center located in the Fountain Square neighborhood!

 UIndy logo

This is an exciting development as we begin to lay the foundation for the first extended neuro-rehabilitation facility in Indiana, and we are thrilled at the opportunity to begin at the Sutphin Center for Clinical Care, which is operated by the University of Indianapolis.  This space will help facilitate a collaboration with UIndy faculty at the prestigious Krannert School of Physical Therapy.  NeuroHope will be launching a capital fundraising campaign next week to gather the resources needed to open doors and begin operation by January 2015.

This is a huge step for NeuroHope.  We now have a wellness room, a location to begin individual workouts with our Physical Therapist Nora Foster, and a place to provide access to Functional Electrical Stimulation, a standing frame, and more.  It’s a perfect jumping off point as we build our services and funding.

Official campaign details and promotional video – coming next week!

Help us open our doors! Stay tuned.

Nora Foster Becomes NeuroHope’s Director of Therapy

When we unveiled NeuroHope last March our top priority was finding the right physical therapist.

The vision and the inspiration discussed on this website can only take us so far. The right clinician drives everything we hope to accomplish.  We knew finding that person would not be an easy task.

We needed an ambitious Doctor of Physical Therapy with experience in neurologic recovery.  Someone who has worked with spinal cord injuries and the intricacies and complications, from spasticity to blood pressure variances, that come with it.

We needed someone passionate about activity based recovery, with an understanding that aggressive exercise after injury promotes neuroplasticity and long-term health.

We needed someone that recognized the need for continued rehabilitation, and who was willing to take a chance with a start-up non-profit with a vision.

We found her!

I’m thrilled to announce Physical Therapist Nora Foster has joined us to become NeuroHope’s Director of Therapy

I have rehabbed with more therapists than I can count throughout my recovery. Some have different areas of expertise than others, and some have better skill sets than others.  There is nothing more important than a clinician’s quality of care and we are thrilled to have Nora leading the way for NeuroHope as we begin raising funds to open our doors!

You can read here bio below:

Nora shares the NeuroHope vision of creating Indiana’s first extended rehabilitative and wellness facility, and she is excited to provide future clients with the aggressive, activity based therapy and exercise they need.

Nora is a graduate of Bethel College (IN) and earned her Doctorate degree (DPT) from the Krannert School of Physical Therapy at the University of Indianapolis.

During her graduate studies, Nora became passionate about working with the neurologic population.  She began her clinical career working at an inpatient rehabilitation facility specializing in Spinal Cord Injury (SCI), and has also spent time at both skilled nursing facilities and outpatient clinics, and has attended courses in SCI, clinical education and wheelchair positioning.

She is an active member of the American Physical Therapy Association (APTA), a certified Clinical Instructor, and has helped create a SCI support group in the Indianapolis area.  Her research activities include a published study in the NeuroRehabilitation journal on community-based group exercise for persons with Parkinson’s disease.

Nora married her husband Brent in 2013. They enjoy traveling, the outdoors, and are active campers and kayakers.