Hero's Path Palliative Care

Imagine walking into a living room and seeing not couches and a TV, but a special bed, ventilator, and monitors.  A mom turns and smiles confidently, but she also looks exhausted from being awake all night.  Yet, there's so much strength, love, and courage in this room.  The child may have just experienced an emergency trach change because his airway was plugged, but he smiles at you, too.  A sibling stands by, signing his favorite song in ASL.

Children with complex medical needs benefit greatly from comprehensive and tailored support in the comfort of their own homes.  Frequent medical trauma further impacts how care can most effectively be delivered.  Our current medical systems are not equipped to provide the intensive, specialized support that the entire family needs.  While they are courageous and full of strength, these families are human.  Funding will expand our current services to provide the comprehensive and specialized care that these families need, including respite programs, educational enrichment for homebound students, and emotional/social support for all family members. Support from Elevate Prize will help us advocate for these families and educate the community on the amazing and fulfilling lives of this vulnerable and heroic population.

First and foremost, I am James’s mom. As a toddler, he knew how to tease everyone and get into mischief.  James had Down syndrome and other medical diagnoses that made it difficult for him to breathe and eat.  He also had a trach and g-tube.  When he got sick, he needed a ventilator for months.  Imagine an active and fun-loving toddler attached to a ventilator!  His life was full and vibrant (he rode a horse multiple times a week)!  The last year of his life, he started to decline rapidly.  Once able to run and walk up stairs, he now needed help sitting. He had intense pain all the time.  Having complex medical problems meant many of his needs could not be met in New Mexico, so we traveled to Colorado multiple times a month to get the care he needed.   Doing this meant I missed many of my other kids' milestones.  We want to provide the comprehensive and intensive support to help children and families thrive and access their communities.  Communities who experience these phenomenal children will be transformed!  We want to provide home-based palliative care and respite statewide.  We hope our model can be used nationally and globally.

One-fourth of all households in America have a child with special health care needs (CSHCN).  One-third of those households need home-based medical care.  This number is increasing because more children with serious illness are surviving longer.  These children and families should have the support they need to not only survive, but to thrive.

Our program currently uses our personal experience and our rapport with families to design programs that suit their unique needs, even in the pandemic.  We provide safe avenues to get a break (respite), and interact with other families.  These opportunities also provide educational enrichment to their children regardless of developmental ability.  Our programs foster family connection and memory-making.  These programs require connecting with many community partners, including nurses and educational experts, while also tapping in to our own expertise: personal experience.  Eventually, our program will expand to provide home-based palliative care complete with medical appointments in the comfort of their own homes and 24/7 access to medical staff.  We will have a respite house where kids can have a camp-like experience with skilled nurses so the parents and other family members can get a break, reconnect, and refresh.

Often the challenge for health care programs is that there are highly trained professionals that are looking at a problem through their training and experience. Our organization was founded by parents of children with serious
illness.  We have experienced the intense need personally and are
committed to finding specialized, family-centered supports customized
for each family.  Because many of these families have experienced battles
and trauma within the health care and educational systems, it is often
difficult for them to trust and feel comfortable with care providers. 
But they see themselves in us because of our shared experiences.  Our programs are designed by families, for families.

Having a parent perspective to start with will make our program more effective. We are starting off outside of a major health system so we can truly provide what the child and family needs without having to prioritize the needs of the health care system (the bottom line finances, or other programs and patient groups).

Our foundational step is our lived experience.  On that we expanded our knowledge base through researching other programs (Hellen House in UK, Ryan House in Phoenix - personal visit/tour), professional memberships at the national Level and task force involvement.  Our state connections to leadership and families is extensive through various avenues, including advocacy and parent groups.  This allows us to understand not only the family perspective, but also payors, and other stakeholder's viewpoints.

The Palliative Care Leadership Center assists us in program design.  They have expertise in palliative care program design.  This allows us to understand what makes a program sustainable and duplicate-able. 

We have started to serve our community through small programs.  This is building trust not only with the families, but also with community partners and funders.

Our biggest reason for impact is that we have lived the life of those we serve. We know what would help and what is needed, but we also know every story is different. There needs to be customized care, we need to keep listening to families, and putting the child (and their wisdom) first through goals set by the child and family (not our goals).  Their stories and voices are powerful.