An Interview with Alicia Cone

Director of Program Operations, Tennessee Council on Developmental Disabilities

What's your personal connection to Tennessee? Has that shaped your work?

My personal connection to Tennessee is twofold: 1) love of music, and 2) attending university in Nashville.

I knew Nashville was the heart of country music since I was a little girl, and I always hung on to the idea of living in a city dedicated to music. As I got older, I learned of Tennessee's (especially Memphis') roots in blues music, and the state's deep history with Bluegrass, Gospel and Christian music.

The idea of a state devoted to all types of music, with a hub of activity in two major cities only increased my desire to live here. This meant when I learned about undergraduate educational options in Tennessee, Vanderbilt University quickly became my early selection choice. Nashville was exactly all that I hoped it would be…Music City, USA. Nashville has been full of life and as I came to discover, all sorts of additional cultural offerings.

I'm not sure that initial desire shaped my work, but I do know that it shaped my desire regarding where to work. It took some time, but I focused my efforts of getting back to Nashville once I graduated from Vanderbilt. By the time I returned to Tennessee/Nashville, I had chosen to work in the field of intellectual and developmental disabilities, and knew I wanted to assist Tennesseans with disabilities to live their most inclusive, self-determining lives.

I had learned enough with my pervious work experience in Mississippi, Maryland, and Virginia to know that my focus in Tennessee needed to be on systems work…improving the policy and practices that guide service systems and bringing fragmented/disjointed systems together in order to better serve Tennesseans with disabilities and their families.

What keeps you motivated when the work feels hard?

After 35 plus years doing this work, from the perspective of direct support professional to manager, I finally realize that I am part of a dedicated bulwark to stop the system from regressing back to the old ways of isolation, separation, segregation, exclusion, and institutionalization.

I have had to finally admit to myself, that we are one bad administration away from not just descending into disorder, but complete chaos.

The type of chaos that results in the removal of the protections and systems (read, laws, rules, regulations, best practices) that have freed people with disabilities to lead lives as rich and full as those of people without disabilities. Progress does not stand without constant vigilance, tending to, and when necessary, defense.

Looking back on your time in Tennessee's disability community, what stands out as the single most important milestone you witnessed or helped create?

Employment! One of the earliest projects I lead was increasing the number of people served by DDA (then DMRS) who were in community-based employment. That work began in 2000…literally my first project after joining the Council. After gathering data on DDA's employment numbers and rate for people with developmental disabilities, we offered a challenge grant to increase the percentage from an estimated 8% to 25% over the period of several years.

We negotiated the creation of a coalition that would direct the work and how the money was spent to achieve the increased employment outcomes. Eventually the Tennessee Employment Consortium was created and we tackled issues such as:

1) the lack of a data collection system to track employment outcomes,

2) incentives for provider agencies to convert from shelter-based work with low wages, to community based supported and competitive employment models,

3) the importance of provider contracts that set benchmarks for employment outcomes,

4) the importance of a clear policy statement from the department leadership in support of community-based competitive and supported employment (which led to the Deputy Commissioner of DMRS (which would become DDA) signing an Executive Order declaring DMRS was an Employment First department within state government),

5) outreach to the business community,

6) training for job developers and job coaches, etc.

These efforts laid the groundwork for Tennessee becoming an Employment First! state over a decade later in 2013. It was during this timeframe that additional inclusive models of employment were begun here in Tennessee, such as Project SEARCH, in the form of Project Opportunity, and Supported Self-Employment.

How did that moment change the day-to-day lives of people with disabilities or their families?

I believe it helped to move Tennessee away from congregate work settings and below minimum wage pay that is the cornerstone of sheltered work, whether that work is happening in a sheltered workshop or the community. This began the process of better defining community-based competitive or supported employment.

Acceptable definitions of employment moved away from community-based isolated and segregated models such as enclaves and crew work (such as cleaning crews) to individualized community based employment.

Lessons for Future Advocates

What lessons from that experience should today's advocates keep in mind as we move forward?

Change takes time, be dedicated to the work for change for the long haul. Be clear in your endgame. Be patient. Be steadfast in your determination to reach the change you are seeking. Be assertive, not aggressive. Never show anger or frustration, be the calm in the storm. Be factual and honest. Build coalitions, gather allies, make connections, develop networks. Be humble. Be flexible, innovative and multi-pronged in your work to solve the problem(s).

And to quote Winston Churchill,

"This is the primary lesson: never give in, never give in, never, never, never, never—in nothing, great or small, large or petty—never give in except to convictions of honour and good sense…" - Harrow School, 29 October 1941.

Fast forward 20 years: if everything went exactly the way you hope, what would disability services and inclusion in Tennessee look like?

Naively, I used to think that if I worked hard enough that by the end of my career I would "work myself out of a job". That was my thinking and my goal.

I had this idea that once something in the service system was fixed, improved, changed for the better that it would stay that way. It was permanently and forever "fixed" and I could move on to the next part of the fragmented system and fix it…and so on until every part of the service system was connected and moving in the same direction toward inclusion, self-determination, decision making supports, belonging, and a rich life in the community. What I failed to realize is that a system unattended does not remain as it should be…at best it stagnates…at worst it reverts.

So, what does disability services and inclusion in Tennessee look like in 20 years? Still a work in progress, with more of the system defragmented and moving toward belonging, with the part of the system that is already aligned and operating effectively well-tended and protected from regression.

What concrete first step could we take this year to start moving toward that vision?

Take any steps necessary to preserve the progress already made.

If need be, focus on protecting as much of the laws and best practices…the pieces of the system that are working…over the coming years.

Make plans to weather the storm with as much progress in the disability service system preserved as possible.

If you could give one piece of advice to the next generation of leaders in our field, what would it be?

I’d ask the next generation of leaders to consider the following pieces of advice:

1. Practice long-term thinking and planning. The story arc of your work life as a leader in the field of intellectual and developmental disabilities must be long term…spanning decades, not years. Protecting the progress that has been made and expanding that progress happens with a vision that goes beyond your career in the field. 

2. Consider the field of I/DD holistically. History matters, know what has come before you arrived on the scene, and use it to inform your current work as well as your vision casting for the future. How does what you are currently seeing and dealing with fit into the overall history of the field?

3. Ask questions…lots of questions. Are you seeing something new or something old dressed up to look like innovation? Are we beginning to repeat ourselves? Is everything new again? If yes, time for a reality check about repeating old actions, but expecting a different outcome.

4. Collect good data and learn from its analysis. How are you using evaluation? What is the data telling you? Do you have data to support the direction your work is moving? Are you nimble enough to change direction if your evaluation reveals negative,  unintended consequences?

You’ve been with the Council for over two decades. What are the biggest shifts you’ve seen in how state government supports people with disabilities — and what role do you think the Council played in those changes?

I think the biggest shifts have come in the following areas –

1. Closure of institutions – supporting people with I/DD in the community is small homes versus large institutions.
2. Employment/Employment First!/Tennessee as a model employer – movement away from segregated, congregate law-wage work to community based, integrated supported or competitive employment; and actively seeking state employees with disabilities.
3. Transition – movement toward better trained school staff and more coordinated transition efforts.
4. Decision making support – movement away from automatic conservators to having supports in place so people with I/DD can make decisions about how they will live.
5. Behavioral health – there is work being done at some many levels it is hard to track, but there seems to be a synergy around this now.
6. Transportation – creating the first ever office of accessible transportation in the nation.
7. Recreation – specifically the movement at the state parks to make them the most accessible across the country.

The Council has had a hand in every area listed and so many more. Our role is always some mix of – 

1.    Being the vision caster…seeing the change that is needed.
2.    Welcoming others into and supporting the work for positive change.
3.    Building and supporting alliances/coalitions/networks to bring about needed change.
4.    Sustaining the change by making sure it is housed where it will flourish, often within state government.

I know officially we are the Sage and I believe in that role wholeheartedly. Recently I have begun to think of us as having an additional sub-role as Sentinel, whose job is to be vigilant, watching over and guarding against losing the systems progress we have spent 50 years creating and expanding.

Looking ahead, what single systems level metric would you most like Tennessee to start tracking that we don’t capture well today—and how would it change decision making?

I would love to focus more on measuring belonging or maybe a person’s sense of belonging in their community of choice.

I keep thinking about how to form some kind or partnership with Dr. Carter to do some deeper level work here in Tennessee to increase belonging. The work is very individualized and time intensive. I think this may be a better indicator of successful supports and services than anything I have heard in a while.