PHOENIX – Madison Wentland knew something wasn’t right with her son, Jude. Despite a normal pregnancy and birth, Jude was hospitalized by the time he was 3 months old for failure to thrive. He was diagnosed with GRIN2D when he turned 2.

Jude is one of only 30 patients worldwide diagnosed with the genetic disorder. He suffers from epilepsy, sleep issues and developmental delays that require 24-hour care. The Wentland family moved from Seattle to Phoenix soon after Jude was diagnosed. With no idea the resources that were available to them, the family was overwhelmed and unsure of what the future would hold.

Eventually, the Wentlands connected with a family whose child had the same genetic disorder as Jude. They recommended a physician at Phoenix Children’s Hospital, who referred the Wentlands to seek respite care at Ryan House.

“Jude isn’t able to speak, but his actions speak for him,” Madison Wentland said. “He takes off the second he gets to Ryan House. He goes straight through the doors, and he goes to find his favorite people. I know he loves it. And I know it’s a really special place for him.”

Dire need for pediatric hospice services

One of only three pediatric hospice homes in the United States, Ryan House is a nonprofit that provides respite and palliative care as well as hospice to children with life-limiting illnesses in Arizona. But it can serve only eight children at a time.

The need for pediatric palliative services is far greater than the limited options available to families. On any given day, there are 5,000 children with chronic illnesses that are within the last six months of their lives, according to a study from the National Hospice and Palliative Care Organization. The organization has updated its data and is expected to release it in late May.

Christy Torkildson, chair of the National Hospice and Palliative Care Organizations Facts and Figures Workgroup, said more children with chronic or complex medical conditions are living longer than ever, so the need for respite and hospice care has dramatically escalated.

Not only is there a dire shortage of pediatric hospice homes, one in five children’s hospitals do not even have a palliative care program, according to research by Dr. Meaghann S. Weaver, a pediatrician with the University of Nebraska Medical Center. Her findings were published in the October edition of Pediatrics, the official journal of the American Academy of Pediatrics. Weaver found that many of the children’s hospitals with palliative care programs are located in large cities, leaving rural communities and families with almost no options.

“Kids in less densely populated areas don’t have easy access to these services. Asking families to bring their children and drive sometimes hours to come and see us is extremely difficult and sometimes not even possible due to their condition,” said Dr. Billie Winegard, a pediatric palliative care provider at Phoenix Children’s Hospital.

And even when a pediatric hospital has a palliative care program, about 72% are not able to refer parents to a respite or hospice program in their community because they do not exist, Torkildson said.

Nationally, only 31% of responding agencies from the National Hospice and Palliative Care Organization’s updated Facts and Figures had a complete pediatric-trained palliative care team that would include a physician, nurse, social worker and chaplain, Torkildson said.

Phoenix Children’s has a palliative care team focused on helping children and their families cope with life-threatening conditions. They often recommend families to also seek care at Ryan House.

Family sought place for improving quality of life

Jonathan and Holly Cottor created Ryan House out of necessity. Their son, Ryan, was born with spinal muscular atrophy, a genetic disorder that leads to loss of motor neurons in the spinal cord, causing muscles to become weak and waste away. The family, natives of Arizona, was living in London at the time of his diagnosis.

“We were told to take him (Ryan) home, love him and don’t expect him to live past his second birthday. Our world was shattered,” Jonathan said.

Eleven hours away from family in Phoenix, the Cottors struggled to figure out their next steps. Care professionals referred them to Helen House in Oxford, England. Helen House, now called Helen and Douglas House, was the world’s first children’s hospice home.

Though many associate hospice with death, Helen and Douglas House staff do not dwell on dying. They focus on creating memories and positive experiences while providing families with support. The house also provides families who have shared experiences the chance to connect with one another by doing activities like playing on an accessible playground or eating meals together.

Helen and Douglas House offers what some refer to as respite care to provide parents a reprieve from 24-hour care of children with life-limiting illnesses. It not only allowed Ryan’s parents the chance to do chores or catch up on sleep, but spend one-on-one time with Ryan’s older brother, Ethan.

Wanting to surround Ryan with additional family and love, the Cottors decided to move back to Arizona. During one of their final visits at Helen and Douglas House, they asked about facilities in the United States where Ryan could continue his care. There were no options remotely similar to the care he was receiving in Oxford, Jonathan said.

“Children have been diagnosed with life-limiting conditions forever. Children sadly die and that’s been the case for many, many years. People in America don’t like to think about that,” Jonathan said.

Ryan’s legacy continues through nonprofit

The Cottors’ first goal when they returned to Phoenix was to establish a place with services like those they found at Helen and Douglas House. Holly started talking to community members and friends about the care Ryan received while they lived in England. Many rallied around her in support of opening a facility like Helen and Douglas House, and were shocked that nothing like it existed.

Their dream became a reality when Ryan House opened in 2010 in midtown Phoenix, on property donated by St. Joseph’s Hospital. The nonprofit is on a 60-year lease for $1 each year. Ryan House also has a partnership with Hospice of the Valley, which has a 12-bed facility on the second floor of the building.

Ryan Cottor, for whom Ryan House was named, celebrates his 17th birthday. (Photo courtesy of Holly Cottor)

Ryan Cottor was 17 years, 7 months and 7 days old when he died at the house named in his honor. His legacy continues to help other children like him. To date, Ryan House says it has helped more than 1,000 children and their families.

Tracy Leonard-Warner, executive director of Ryan House, said the focus is on quality of life.

“We want to make sure that our kids across the spectrum, whether they’re here for respite or hospice, are comfortable and feel like they’re in a loving and caring environment,” she said.

Children can stay up to 28 days a year for respite care. Families can use those days however they need. For some, it may be a short stay; for others it may be up to a week. An average hospice stay is typically between two to four weeks, but could be 24 hours or less, Leonard-Warner said.

Six rooms are usually used for respite care and two others are reserved for hospice services. In addition, three family suites allow parents to stay with their children, whether for hospice or their initial respite visit. The house is summer camp-themed so all the rooms have unique names, like the kitchen, which is affectionately called the S’mores Cafe. Other rooms include a sensory room, swimming pool and music room.

“Ryan House is a wonderful organization that provides much-needed service, but it’s limited in scope,” Torkildson said. “There are a lot more children who need respite care, but they can’t all be served by one facility.”

Of 298 families who used Ryan House in fiscal 2021, 100% said they would recommend it to friends and family, according to a survey by the facility.

There are two other child hospice and respite homes in the United States, one in San Leandro, California, and the other in Brooklyn Center, Minnesota. Both provide respite care to families with sick children, but like Ryan House, are limited by their bed spaces and staffing.

Jonathan Cottor continues working in Ryan’s honor. He partnered with pediatricians and palliative care specialists to create the National Center for Pediatric Palliative Care Homes. The organization’s goal is to build places like Ryan House across the country. But it takes a lot of commitment, money and in some cases, legislation to open more houses.

Legislation, licensing and limitations

Legislation at the national level will help the organization achieve its goal of meeting the needs of pediatric palliative, respite and hospice care, Cottor said.

Children with medical complexities qualify for Medicare, but each state has its own interpretation of the federal care guidelines. When the Affordable Care Act was passed in 2010, Section 2302, the “Concurrent Care for Children,” was enacted. Concurrent care enables families to get Medicare payment for hospice care without forfeiting the right to payment for other treatment for a child.

While it was progress, there are still limitations for families of children with medical complexities. The Concurrent Care policy provided care to children within the last six months of their life. With advances in medicine, many children are outliving their original predicted life spans, which could prohibit them from receiving concurrent care, Cottor said.

“We have to eliminate the last six months of life clause,” he said. “If we could do that, then people would recognize that we can start offering much more respite care and other curative kinds of care from the moment the child is diagnosed. When that happens, we can start getting appropriate licensing for homes like this and appropriate insurance reimbursement.”

Artwork from a grateful resident at Ryan House. (Photo by Sierra Alvarez/Cronkite News)

Licensing is another factor limiting opportunities for places like Ryan House, Cottor said. Pediatric hospice homes are licensed by their respective state health departments.

Since there are so few of these facilities, there is no current licensing that covers all the needs of the homes. Most licensing is for adult hospice and respite care facilities.

“You’re trying to take a new kind of care model into existing regulations, and everybody agrees it doesn’t really fit,” Cottor said. “The current licensing was written by people from decades ago and mostly with an adult mentality.”

Another reason for the lack of pediatric hospice homes is that they are expensive to operate. In fiscal 2021, Ryan House had operating expenses over $2.8 million, which were mostly funded through donations and some government grants. Staffing and specialized equipment make up a large majority of these costs. For example, a bathtub at Ryan House uses lifts to make it easier for a child with a disability to get in and out of the tub, and a regulator keeps the water at a constant temperature.

Without conversations about licensing, reimbursement for families and fundraising, there will continue to be limited opportunities for these kinds of facilities to open across the country, Cottor said.

“We have to find ways to support the families. Not only with nursing care, but with providing the ability for families to take a break, because more often than not, these children need 24/7 care. That can be emotionally and physically exhausting,” Torkildson said.