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It’s About You: Changing the Narrative

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It’s About You: Changing the Narrative

Barbara Merrill, Esq.

2017: a milestone year. But it was a year that had us on the defensive throughout. 2018 promises more defense, but we’re also getting ready to go on the offense.

However, first things first: Thank you ANCOR members for stepping up and responding to our action alerts last year in UNPRECENTED numbers! You proved the power of association – together we generated over 29,000 emails to Congress, over 17,000 tweets and retweets, and so many phone calls that the Congressional switchboard lines were jammed!

Never in my 25 years of representing providers have the stakes ever felt as high. Never have we come as close as we did to losing Medicaid as an uncapped federal entitlement. What began as an attempt by the majority in Congress to repeal – or repeal and replace – the Affordable Care Act quickly became much more. It resulted in multiple attempts to dramatically cut the amount of federal dollars available to states to address critically underfunded services.

And honestly, after the Great Recession years of state level rate cuts, followed by the introduction of managed care in several markets, DOL FSLA rules, the HCBS settings rule, the worst DSP workforce crisis we have ever experienced – it was rough. Very rough. But there was a silver lining, and as I shared in this column in December, it was that shining moment when the country finally figured out what Medicaid is and what it does.

Cause to celebrate for sure! But it’s not enough, and that’s why the next step is to tell the story of who does it. And that’s you – that is your organization, your staff, your programs, all funded almost exclusively by Medicaid, that support people to live in the community.

That’s why the ANCOR Foundation is rolling out, over the next year, the Included. Supported. Empowered. Campaign.

Three words, with Supported smack in the middle. Because the goal of this three year public awareness campaign is to convey the value and importance of community services for people with intellectual and developmental disabilities (I/DD) and highlight the provider support networks that enable them to succeed.

By sharing stories and using digital and social media, we will be shining a positive light on the successes of community integration and the role of providers in supporting people with I/DD to be active, valued, and contributing members in all of our communities in every state.

I hope you have been following our reporting on the federal HHS Office of Inspector General Investigations into group home abuse and neglect, and recommendations to Congress and states. I also hope you know that we are fully engaged in pushing back where appropriate, and seeking opportunities to work with policy makers and other stakeholders to advance solutions and systems improvements that make sense. Please also rest assured that we are diligently educating the press, the federal government and members of Congress about the relationship between health and safety and the workforce crisis.

But as you know, and we know, the barrage of negative pressures on community providers isn’t just about fundamental issues of health and safety.

That’s why we feel strongly that we must take the lead in fostering an environment where community providers are appreciated. An environment that reinforces to people why they have chosen this field – that honors the passion, the commitment and the ability to transform people’s lives.

I’ll share a story that reinforces why this campaign is so critical right now. I recently participated in a series of meetings and brainstorming sessions with a group of people representing state IDD agencies, NASDDDS/SELN, the ICI at the University of U Mass-Boston, and ANCOR members including some of our state association executives. Our focus was to help identify barriers to expanding integrated employment. The barriers we identified varied somewhat across the country – not surprisingly the lack of provider incentives were a common theme.

But at one point a participant in the group asked a larger question: how do we attract the next generation of leaders that will move the needle on integrated employment, the leaders that have passion and fire in their bellies, and the zeal that defined the pioneers that over 40 years ago started this incredible movement of liberating people from the Pennhursts, the Pinelands and the Willowbrooks across the country?

That was my cue to share with them the Included.Supported.Empowered. Campaign. It’s precisely one of the reasons why this campaign is so necessary, and why the timing is so important. We need more people attracted to working in our field, but just as important as recruiting, we need to retain you – our current leaders, our emerging leaders, our front line staff, our supervisors.

Learn more about the campaign here and how specifically you can help here. Share with us your stories, your videos, your photographs – help us tell the story of how you are transforming lives! This campaign is dedicated to honoring and lifting you up. The media, policy makers, charitable foundations, future employees, future board members of your agencies – they need to better understand what you do, and why it is so important to support a healthy and diverse community provider network. This revelation will show why we all have a stake in building opportunities for people with IDD.

Barbara Merrill is CEO of ANCOR. She can be reached at