Mary Ellen Dingley

March 19, 2021

After months of advocacy work, every single core member has received at least a first dose of the COVID-19 vaccine!

How did it all happen? We look back on the timeline of events and how we were called to advocacy. 

Core family members began asking about vaccines when COVID began. “The only way we’re going to get out of this will be with a vaccine,” said Charles Clark. Eric asked when we would get the vaccine. Luke Smith, executive director and community leader at L’Arche GWDC, wondered how we would respond to questions from Eric? From Eileen? From other core members? Core members are some of the most vulnerable to the virus, and yet PPE and funding for people with disabilities and their support systems wasn’t forthcoming. 

“That’s the beginning of the story,” said Luke. “The recognition that people with intellectual disabilities are so often forgotten about in health care systems.” 

That knowledge and experience propelled L’Arche GWDC to say that advocacy needs to be a priority. “Our actions can’t just be, well, we sent an email. They must be organizational.”

Luke recalls an Arlington Town hall meeting on a Friday afternoon in May – he asked officials “are people with intellectual disabilities and their caregivers included in the planning for future vaccine access?” The response? “Great question.” It appeared Arlington hadn’t thought of people with intellectual disabilities yet. 

Meanwhile, L’Arche around the globe was receiving the same sort of question: “what is L’Arche doing to get the vaccine?” Everyone was feeling frustrated with the lack of answers. 

The concerns around vaccine access was the same as those with funding and PPE – that people with intellectual disabilities, and those that support them, would be forgotten yet again. 

The discussion on vaccines really got underway in July 2020. In March and April of 2020 L’Arche GWDC had a difficult time getting PPE, and home and community based services (what L’Arche is) were not getting the funding they needed in stimulus packages. There was a lot of worry that with vaccines “We’re gonna get left behind again” said Eva-Elizabeth Chisholm, our Human Services Leader.

While in other times we might have played a wait and see game, in the pandemic we could not wait. As soon as they heard vaccines were coming down the pipeline, Luke said they started contacting the mayor’s office in DC and the Virginia legislative body to be considering people with intellectual disabilities. 

In Virginia 

Virginia’s Department of Behavioral Health and Developmental Services (DBHDS) let service providers know that there was a likelihood of a vaccine partnership with CVS and in Fall of 2020 they provided drafts of allocation plans to the public. While there was a frequent lag in information, people with disabilities receiving support from DBHDS in Virginia were prioritized as 1a from the beginning. For people with disabilities not receiving waivers and support from DBHDs, advocates, including at L’Arche GWDC, wrote representative sasking that they also be prioritized. 

In Virginia we were able to get answers to our questions eventually. Our advocacy in Virginia was about figuring out timing and “making sure that we weren’t forgotten,” said Eva-Elizabeth.  We joined with other groups to make our voices heard. 

It helped that we are well connected in Virginia and had great relationships with local partners, including with the Arc of Northern Virginia as well as our local representatives. Our core family members have spoken at county meetings and are known by different county leaders. 

In DC

Meanwhile in DC, there was a lot of confusion and waiting in uncertainty. We weren’t sure what the classification of “group home” meant, and definitions and prioritization information shifted. 

Around January of 2020, we found out that while certain types of group homes in DC would be prioritized for vaccine access, Supported Living waivers would not be. This included one of our homes. We were never told why certain populations were prioritized as opposed to others, even when rates of infection were comparable.  

We started advocating for ALL people with disabilities to receive prioritization, even as one of our DC homes received their vaccine. Finally, DC cited intellectual disabilities as an underlying health condition in late February. In early March support providers advocated for a clinic specifically for people with intellectual disabilities to receive the vaccine and this was granted! Both of these were huge wins! 

We didn’t have the same relationships in DC as we did in Virginia. Instead, our DC advocacy strategy hung on consistency. Every single week we, along with other DC disability service providers, asked for a status update. We wrote letters. We joined campaigns. We reached out to the DC Council. We showed up to the weekly virtual forums held by the DC Department of Disability Services. 

Having intellectual disabilities listed as an underlying health condition and having a clinic for people with intellectual disabilities were likely due to the coalition of voices of service providers in that weekly forum. 

What worked in our advocacy efforts? What advice would we give for would-be advocates? 

• Build partnerships 

“We need each other,” said Luke. We are trusted by the governments of DC and Virginia, by the core members and their family members, to provide services. “That responsibility is one we can’t take lightly.” 

We affirm local government roles and see ourselves as partners with them, with local nonprofits, and with other providers. We reached out to build relationships with individuals many years before the pandemic, including local politicians and our governing oversight bodies, inviting them to dinners and spaces where they could be celebrated and join in on L’Arche life! “Much easier to get a reply if someone knows who you are,” as Luke put it. 

In DC, a vital partnership was with the DC Coalition of Disability Service Providers, who came together to source PPE and advocate on many fronts. Advocacy is always easier as a collective voice! 

• Claim your space

Luke encouraged us to recognize that our voice, as L’Arche communities, has power. That part of our mission is to be a voice and a sign, not just for our own community but for others. “We have a place in the public sphere.” Luke saw his own role as community leader in advocacy as a way “To create the environment on which others take on the role of advocacy”

• Develop your Strategy 

Take the time to figure out the best strategy for advocating. Who is speaking up on the issues? Can you join your voice with theirs? Who actually reads emails? (Include politician’s staffers on emails!) Include media articles in communications. Have a communications plan for type of communication and level of intensity. 

Ask for specific needs and provide a plan – like how in DC, providers asked for people with intellectual disabilities to be prioritized, and then provided a way they could do that – with a clinic just for them! 

Have someone in your L’Arche community who has advocacy as part of their role and will be synthesizing thoughts and getting the news out there.

Use stories. Stories are so powerful to change hearts and minds. 

And now what are we looking ahead to advocate on?

Eva-Elizabeth is wondering about the long term plan for vaccine access – what about if we welcome new employees or a new core member? Will they have the same level of access? 

How about “plain language” and “easy read” guides around vaccination? We had to search for that information ourselves. DC Health said they are interested in creating accessible guides about vaccination, and the issue has also been raised in Virginia, but we haven’t seen action yet. 

At the end of the day, advocacy does work.  “It works,” says Luke. “It works to be engaged. It works to recognize our place in being engaged in those relationships.” And we have a responsibility to advocate, especially since we have in our communities people who have faced institutionalized exclusion. 

It helps also to pause and look at what we have achieved in advocacy. So often you don’t see quick results in advocacy. With the vaccine, we can point to a victory!

Featured photo: Laurie signs a letter urging Virginia officials to prioritize vaccine access for people with disabilities