Champions of People With Complex Disabilities
Welcome. We Believe That All Human Beings Are...
Equally Alive
What We Work For:
New Models of Care
As parents and advocates we are focused on the practical—in those areas where scalable solutions are most needed.
Moving the Conversation...
Society once saw all disability as disqualifying...
...until people given the chance proved everyone wrong. While ours is an era of new opportunity for many, we still assume that more complex people have more limited potential.
We once assumed that the best that most people with developmental differences could hope for was a limited life. We have made much progress to reach the point where we accept many at the higher end of ability, while continuing to marginalize those who we assume to be incapable.
Our goal is to give all people the opportunities they need to prove that wrong too.
So Much More Can Be Done
Instead of Lowering Expectations We Need to Raise Standards of Care
Instead of imposing one-size-fits-all solutions we need to promote new understanding of complexity and innovative models of care that support and encourage the more complex. Today, most people with medical and behavioral complexity experience poorly coordinated and often inadequate care.
Ineffective, inhumane and disproportionately expensive.
Our goal is to encourage better care at lower cost, improving the lives of all as we help to shape the sustainable systems of the future. Equally Alive was founded by parents, after all, who are as concerned about the future of care as anyone.
Imagination.
Innovation.
We need new thinking, new optimism, and new solutions. In an age of astonishing possibilities, smart technologies and new understandings of brain and body, we are limited by ideas grounded in the past and models of care unchanged in 50 years.
Better Care.
Lower Costs.
Our systems of support, from schools to hospitals to the communities, are designed for the neurotypical, which helps explain the inadequate and uncoordinated care that fails individuals and burdens society with staggering costs. We all benefit from Informed, personalized care that supports the health and wellbeing of the individual while helping each live the fullest and most vibrant life possible.
Our Vision
Care In Place
Bringing the Hospital To the Patient
Telehealth capabilities now make it possible to raise the level of care without moving individuals from the places where they are most comfortable and best understood. The benefits include reducing ER visits and in-patient stays that place people with disabilities in environments poorly equipped to understand them.
The potential exists to improve care while reducing stress on hospitals, lowering costs and enhancing a range of preventive strategies.
New Designs For Living
Shaping Effective Options
Many people with I/DD require monitoring and medical care delivery in environments that can accommodate individual needs, that may change over time. Yet we continue to use outmoded formats–the family home, apartment or dormitory as a model for residences.
Flexible designs can be explored to the benefit of all. The project will address this challenge and move beyond the idea that any one solution can or should serve as a lifetime placement.
Value-based Payment Models
Key Components of the Systems of the Future
System change on a large scale is challenging but achievable, and new payment systems can serve to accelerate needed changes by rewarding what works and discouraging ineffective strategies.
The goal is to improve outcomes with aligned incentives and encourage best practices. Experience shows that significant improvement depends, in part, on such changes in payment models.
Coordinated Research
The Database Vital for Informed Innovation
Intelligent oversight of research in a field that involves diverse perspectives and areas of expertise is always important. With a cohort so dramatically varied, complex and poorly understood, the lack of a reliable data base is an enormous obstacle.
Unusually complex people not only suffer disproportionately but consume an astonishingly high percentage of the country’s entire Medicaid budget.
Transitional Care
Toward Effective Continuity of Care
Transitions are challenging for all of us, but for those living with significant vulnerability and frequent hospitalizations they frequently become crises. Fragmented and uncoordinated systems of care are unhelpful, at best, but often serve to increase the burden and add to the stresses of these transitions, for individuals as well as providers.
No single strategy can make life changes effortless for the non-neurotypical, but the transition from a hospitalization back to a home environment is an opportunity that can and must be addressed.
A viable model will include three key components: a heightened level of care; an informed assessment of the individual, and a transitional plan for the providers who will resume responsibility for the individual’s care.
Complexity is not a diagnosis but an argument for informed, individualized care.
And it IS possible!
We are breaking free of attitudes toward disability that once narrowed possibilities for all in a vast category that encompasses more than 1 in 5 Americans. At this moment of change we see forceful change agents advocating for themselves and the many other capable people with disabilities.
Meanwhile, we still frequently see those at the higher end of need, more dramatically different and discomforting, as diminished by their differences.
A life of meaning:
When we or our vulnerable loved ones are endangered, safety is our first concern. But today we can at last look beyond a custodial, protected existence and support. As parents we desperately want our children to be safe. As advocates we also want them to have what each of us deserves—the chance to live the most meaningful life possible on our own terms.
Our Task
Enlisting Essential Partners
We are working with government, providers, policy makers, peers and members of many committed organizations all dedicated to the simple ideal of a life worth living for everyone.
The Grant Thompson Story
What Is...and Is Not...Possible Today
Grant's Story Is Similar To the Stories So Many Of Our Families Could Tell
