7 Faces Of The Coming I/DD Revolution
By Tom Schramski, PhD, CMAA, Joshua Boynton, CMAA, Drew Smith, MBA, and Kelly Friedlander, MSW, MPA
Volume 4 Issue 23, November 7, 2017
During the past 50 years, we have experienced profound change in the services and support for people with intellectual/developmental disabilities. Many large, costly, and dehumanizing institutions have closed, while community supports promoting inclusion and self-direction have blossomed across the country. As a result, people with disabilities are living longer than ever, with a higher quality of life. There has been great progress, yet there is still ample room to improve.
Today, services are also affected by significant changes that are creating a disruptive environment in the I/DD marketplace. Support dollars are stagnating for economic reasons, managed care has an increasing role in administering I/DD funding, and our philosophy of support is evolving within this culture of change.
While change often induces more complexities in service delivery, one thing is certain: we are witnessing a revolution. Here is where the revolution is heading:
- An accelerated shift toward more individual service and supports. Our entire healthcare marketplace is moving in this direction and the progressive facility-based services of 20 years ago are becoming the dinosaurs of the near future and beyond. The data to support this conclusion is national and inescapable – brick and mortar supports are being replaced by less traditional community-based supports.
- Services are increasingly impacted by demographics and life span. People with disabilities are living longer than ever before, leading to increased support needs over their life span. This is presenting new challenges for families and friends who are already providing support into their elder years. How the system will adapt traditional service models to these long-term, emerging changes is an opportunity for enlightened entrepreneurs.
- Segregated employment is the past, real employment is shaping the future. The old world of sheltered workshops and sub-minimum wages is moving quickly toward one of supported employment and integrated, competitive employment. And the timing is impeccable – the US economy has a growing need for people with disabilities to work in regular jobs as the total workforce is constricting. Market forces are creating a unique opportunity to achieve the vision of real work and real pay.
- Reimbursement flat-lining is encouraging disruptive innovation. Medicaid is experiencing its most significant changes since inception, including block grants, which will limit reimbursement increases. Disruptive innovation – the move toward more accessibility and affordability of services – is underway and can be aligned with more individualized, person-centered support that is often less expensive than traditional facility-based services.
- The service workforce crisis is favoring direct support entrepreneurs. With the evident, long-term workforce shortage trends, various independent contractor models – such as host home – are becoming more popular. These models are often very appealing to consumers because they encourage support by family and friends, while also resonating with the work values of Millennials.
- Quality of life indicators are being transformed into “whole life” quality outcomes. While gauging outcomes with standardized measures has led to improved services, we are ultimately interested in what is important to everyone – the quality of all areas of our lives.
- We are poised to rapidly (finally) utilize technology to improve services. The I/DD marketplace is possibly the least technology-enabled area of healthcare, from the consumer level to back-office operation. There is a new generation of technology that will also reduce expenses while forcing providers to adapt.
The foundation of this revolution includes key concepts. The first is the notion of “presumed competence.” At its core, we assume everyone is competent, resulting in support based on need and preference, not paternalistic charity. Presumed competence provides a counter yet complementary approach to “dignity of risk” by shifting the notion of providing the dignity to assuming the capabilities to take risk are inherent.
The second is the belief that in any system the key to great service and support is the alignment of financial incentives and desired support. Providers offer service to consumers who happen to have a disability, but the expectation should be no different than they are for other business entities.
Revolutions always create anxiety because of our natural reaction to change. This revolution is doing the same, and there are also many reasons to be excited about what the future holds.
Note: This special issue of SalientValue is co-authored with Drew Smith and Kelly Friedlander of Community Bridges Consulting Group (www.cg-bg.com). We greatly appreciate their inspiration and dialogue that led to this article.