March 27, 2018
“Tom Nerney was a brilliant visionary and pioneer. He was an educator, an advocate, a fighter who wasn’t afraid to challenge authority. He fought for civil rights, inclusion, and self-determination. Tom saw the inhumanity of people not having choice or control over their lives. He pushed for the closure of state-run institutions. His contributions to the field of disability are too numerous to count but his efforts made a lasting impression on the thousands of lives he touched.
He moved forward the principles of Self-Determination, Freedom, Authority, Support, Responsibility and Confirmation. His life was dedicated to seeing people with disabilities have control over their resources, have a home to call their own, intimate relationships, meaningful employment, the same things we all want out of life. He advocated, educated and helped set public policy that would someday put an end to the impoverishment of people with disabilities. He will be greatly missed by many who are forever grateful for his tenacity, his vision and his leadership.”
— Jim Dehem, Co-Founder, The National Center for Self-Determination
In the early 90’s a small group of people with disabilities, family members and professionals led by Tom Nerney, set out on a journey to reform the system of support for people with developmental disabilities. These reforms were predicated on their belief of the almost total loss of basic freedoms experienced by people with disabilities. Tom argued that people will not achieve full citizenship without the adoption of “quality standards” based on “universal human aspirations”.
This movement was named “self-determination”. The original principles included:
- Freedom: the restoration of those decisions that go to the heart of leading rich and varied lives in the community. These include developing a personal life plan, deciding where and with whom to live, how to create income and establishing important community and personal relationships.
- Authority: the ability to personally control (with appropriate assistance) a targeted amount of publically funded long-term care dollars.
- Support: the arrangement of these resources in ways that are unique, meaningful to the person and built on his/her individual preferences.
- Responsibility: the use of these public resources in ways that are wise and cost effective and contribute to one’s community.
- Confirmation: the recognition that individuals with disabilities must be part of the public policy changes necessary to implement self-determination and recognition that families and individuals with disabilities must be included in all re-design issues.
Tom Nerney wrote one of the first monographs in the United States on Self Determination specifically relating to people with developmental disabilities in 1994. It began with a recital of “simple truths”:
“All communities have as members people with disabilities. They are people of worth and value. They belong to family and neighborhoods. They are citizens, fellow workers, customers, and parishioners. They are one of us. Members of our families, our churches, our neighborhoods, people with disabilities who are our friends, our co-workers, our customers, are unwittingly being harmed.
People with disabilities have historically lived in isolation from the wider community. Funding for services and supports was out of their control. People with disabilities were not truly respected for their capabilities and in fact, have been treated like commodities.
But, we have a choice. We could let the isolation continue, but now that we know the simple truths, the harm would continue with intent. Or, we can start a revolution. A revolution to design community mutual support and common cause. A revolution for self-determination!
Self-Determination is a reform movement committed to moving control of the resources for long-term support directly to individuals with disabilities, their families and allies. The foundation for self- determination is the restoration of the ordinary freedoms that all Americans take for granted to individuals who have had to forego these freedoms simply because they need support. Part of this foundation must include a new analysis of the worth of current expenditures and a commitment to realizing a better, more cost effective system for supporting individuals with disabilities.
A person centered plan empowers the person to make decisions with the assistance of their support circle. The focus is on building the person’s dreams, gifts, talents, and resources. The process focuses on Real Life Quality Standards which are universal desires of all people: feeling safe, secure and loved by family and friends; having meaningful employment; financial security and good health; to name a few.
The time has come to fundamentally re-structure human services for individuals with developmental disabilities. What endures as the goal of self-determination from its origins is simply the ability of a person with a disability to craft a meaningful life in the community, overcome the pernicious effects of enforced poverty and experience deep and lasting relationships.”
Tom Nerney 1994
Tom strongly believed that current quality assurance programs were based on “programs and services” provided by human service organizations and NOT on the personal outcomes desired by the person that are universal to all citizens. These “programs” result in people living as second-class citizens because the service standards for quality do not mirror those that all Americans typically desire.
For decades Tom advocated for radical reform and more creativity within Medicaid Waivers and within the system of services provided by human service agencies including supports to assist people to live a meaningful life and develop a budget that assists in attaining that life. His philosophy was simply that self-determination, person-directed planning and budgeting assumes goals and standards which reflect universal human aspirations which should be the foundation of quality in the lives of people with disabilities:
- A place to call home with control over who enters for any purpose
- Real membership in the community
- The preservation or development of strong relationships
- Planning to avoid or emerge from personal impoverishment
Most recently Tom Nerney was the Director for the Institute on Health
Quality and Ethics in RI. Over the years he fought to close institutions, including RI’s Ladd Center, advocated for flexibility and “Community First” within the Home and Community Based Waiver which became law in the 80’s, and was one of the leaders in the “Baby Doe” case in the 80’s when doctors from the medical field were encouraging parents of new born children with disabilities and health issues to let them die. He was the Director for the first nationally funded pilot on self-determination for Monadnock Developmental Services in NH. He became the Co-Director of the Robert Wood Johnson Foundation’s program in the 90’s entitled “Self-Determination for Persons with Developmental Disabilities,” a $7 million national program assisting states in transforming their service delivery systems into community support systems that facilitate persons with disabilities having control over the supports they need to live active and meaningful lives.
He went on to serve as Co-Founder and Director for The Center for Self-Determination in 2000, a national effort to work with states, people with disabilities, families, and professionals to reform and implement the new health care and insurance provisions with a values-based self-determination perspective. He led the cross disability and aging alliance to create a reform agenda within the Center for Medicare and Medicaid services (CMS) through key CMS appointments and served on the Obama pre-election Policy Committee, providing advice on Medicaid and long term care reform.
Other positions included: Executive Director, John E Fogarty Center; Executive Director, Connecticut ARC; Founder of the Corporation for Independent Living, a not-for-profit group responsible for over $100 million in community housing for people with mental health disabilities; Staff to the U. S. Senate Special Committee on Aging; Autism Society Director, Publisher and Editor of the Wallenberg Files; Keynote speaker at over 500 conferences across the country; Appeared on CNN, US News and World Report, NPR, and other media; Authored numerous papers on quality and ethics in human services.
Tom Nerney was the father of Kevin Nerney, Executive Director, RIDDC.
A “Celebration of Life” will be held for Tom on April 7, 2018 at 11:00 am at the:
Unitarian Universalist Congregation of South County
27 North Road, Peace Dale, RI 02879
See videos below of Tom Nerney explaining self-determination and the restoration of citizenship for people with developmental disabilities from three levels: personal, organizational, and political:
Information for this article compiled by Sue Babin, RI Developmental Disabilities Council (RIDDC)