Federal and state governments have made some heroic efforts in recent years to improve healthcare affordability for Americans. The Affordable Health Care Act (aka Obamacare) is perhaps the country’s boldest effort to equalize healthcare access across the nation. Yet according to a 2014 study funded by the Commonwealth Fund, the U.S. continues to rank last among major developed countries when it comes to accessibility, efficiency, equity and quality of care for its citizens.
The study, which looked at 11 developed nations (the U.S., Australia, Canada, Great Britain, France, Germany, New Zealand, Norway, the Netherlands, Sweden and Switzerland). The U.S. not only has the most expensive healthcare system, but it is also "last or near last on dimensions of access, efficiency and equity.”
And it’s no surprise that individuals with complex health problems -- who require supportive care due to developmental disabilities, mental illness or other chronic issues -- are often at greatest risk when it comes to getting adequate healthcare services. While the federal government provides Medicaid funding, it is up to the states to determine how and under what circumstances it is spent.
That local control allow states to regulate funds that in the past were largely directed at care in institutionalized settings like assisted living and extended care facilities. These days, more and more states are realizing the value of expanding Medicaid access to home care settings. Still, not all states administer those valuable dollars in the same way. The services available for an adult with a developmental disability, for example, can vary widely from state to state because programs are based on local priorities, not on national mandates.
Take Oregon, where limited part-time pay is provided for family caregivers who are willing to stay at home and care for a chronically ill loved one. The payment the family member(s) receive is determined by the amount of personalized care the individual needs on a weekly basis. Oregon’s program is based on the belief that home care by family members costs less than private facility care, where insurance, bulky regulations and other costs have to be factored in.
But home-based care provides another benefit as well, noted healthcare consultant Josh Boynton: It helps ensure that individuals who don’t need to be in a care facility can pursue a better quality of life and, often, increase their daily independence. For some, that translates to more stable health conditions as well as a happier lifestyle. [Full disclosure, Josh is a cousin to TriplePundit Editor in Chief Jen Boynton. He was chosen for this interview for his expertise in the area of developmental disabilities.]
Boynton is the former CEO of LifeShare, which he and his wife Rachel founded 20 years ago in New Hampshire in an effort to offer better manage care to individuals with disabilities. Boynton said the concept for the company emerged when he realized the available state programs couldn’t fully address the care needs of their client, Ron, a young man with developmental disabilities and multiple health challenges.
“[We] quickly realized that the [health services] system that was supporting Ron … was really about the system. It wasn’t about the person that was receiving the services,” Boynton recalled. That pre-designed menu of services required individuals to meet the needs and qualifications of the program rather than to ask, “What does Ron need?”
For Josh Boynton and his wife, this seemed strange. Boynton grew up in the health services setting, majored in human services in university and worked as a case manager for an area agency in the state. The couple knew from working with individuals with disabilities that any successful program needed to be able to adapt to the specific needs of the client, not the other way around.
“So, we went to the state and said: 'Hey, would you consider allowing Ron and his team to really be the one to drive the services and create the service plan, hire and train the staff that would support Ron?' It might have seemed like a long shot at the time. But the state, which had just received a grant to start a new health services program, said 'Let’s try it.'”
What emerged would eventually become the template for a new approach to managed care in which the daily tasks like preparing meals, assisting with hygiene, and providing transportation to doctors’ visits became part of the bigger goal of addressing what Ron wanted to do with his life. And it did something else: It took into account that Ron -- like every other person -- had the potential to change, grow and seek his own dreams.
“We started to support Ron through this individualized service option where we said: 'You know what? Let’s design the system to evolve and move as Ron moves and evolves.' Ron was an artist. He would spend hours and hours and hours putting together these brilliant colors. So we [thought] ... Instead of trying to fit Ron into a box -- you know, put Ron into this employment setting or this sheltered workshop -- let’s create an art co-op. We’re hire fellow artists to work with Ron."
The idea was a hit. “There was a little art co-op in a small college town in New Hampshire, and it was a place where people with all abilities would come and do their art,” Boynton said. For the first time in his life, Ron, who was unable to speak and spent his younger years in institutionalized care, was actually able to share his own talents with others. “He wasn’t seen as somebody with a disability who needed services. He was seen as somebody who had talents and was part of a community.”
As time went on, Josh and Rachel saw something else: Ron began to change. What Boynton calls “institutionalized behaviors,” which served as part of Ron’s communication mechanisms when he struggled to connect with people, began to lessen. “He started to really interact. His anxiety went down; the tension in his life was down; and his smile got brighter and brighter and brighter.”
“It sort of organically grew from there,” Boynton said. People learned about Ron and his care team, and one by one friends and strangers stepped forward seeking information about how they could encourage and create an individualized service option that could tailor better, more personalized care for their family member or friend. “[It] got into several states, supported hundreds of folks and it never lost the value, never lost the vision and never lost the approach.”
That approach put forth a simple premise, Boynton explained: “Real service for real people.” The concept of a person-centered approach that can explore how the service team can make someone's life better, rather than how the individual can fit within the parameters of a set program.
As LifeShare continued to grow, its reputation did also. It took root in other states, but not before helping to transform New Hampshire’s Medicaid program. Today, the state’s Choice for Independence program is considered a model example of progressive thinking when it comes to addressing the needs of persons with disabilities.
Its name, which was eventually changed from the Elderly and Chronically Ill Waver, reflects the new thinking of a person-centered approach that supports the whole individual. And its qualifications are set not only to be attainable, but to meet the individual circumstances of its applicants – just as is the program.
The Boyntons sold LifeShare to the Centene Corp last year. But its impact can still be felt in the communities it served. For Boynton, its growth is proof that there are ways to make sure that delivery systems meet the needs of an individual – irrespective of their medical challenges.
Still, to do that on a national level, he maintains, U.S. health services will need to be restructured -- and soon.
“There are 5 million people [in the United States] who have been put in the category of living with a developmental disability,” Boynton said. He maintains that only 600,000 of those 5 million actually get adequate care. And that’s at a steep price.
“We are costing over $100 billion in Medicaid services. So if we are spending $100 billion for 600,000 people and you have another 2.5 million living with aging caregivers,” or faced with seeking services in emergency rooms, or receiving no services at all, “in 10 to 15 years, we will need support for millions.
“We need a bold change, a disruptive innovation,” Boynton said, that makes it easier to seek individualized care.
It’s a view that other experts echo as well.
“The United States in particular has opportunities to learn from diverse payment innovations and care redesign efforts under way in the other study countries,” explain researchers at the Commonwealth Fund.
Thanks to the innovative efforts that eventually became LifeShare, we may already be on our way.
Image credit: Flickr/zeevveez
Jan Lee is a former news editor and award-winning editorial writer whose non-fiction and fiction have been published in the U.S., Canada, Mexico, the U.K. and Australia. Her articles and posts can be found on TriplePundit, JustMeans, and her blog, The Multicultural Jew, as well as other publications. She currently splits her residence between the city of Vancouver, British Columbia and the rural farmlands of Idaho.