The State of America’s Direct Support Workforce Crisis 2022

The longstanding direct support workforce crisis, exacerbated by the COVID-19 pandemic, has led to closures of critically needed services and a denial of access to community-based supports.
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Capitol Correspondence - 04.26.21

White House Forum Transcript: “Breaking Down Barriers for People Who Have Challenges Accessing COVID-19 Vaccination”

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Last week, ANCOR CEO Barbara Merrill attended a White House forum examining barriers to COVID-19 vaccination. For the convenience of our members, she shared excerpts from the transcript of that forum that are specific to the disability community:

Acting Administrator of the Administration for Community Living, Allison Barkoff: “I’m Allison Barkoff. I’m a white woman with chin-length hair wearing a maroon shirt. I appreciate the opportunity to be here. Linda and I are going to talk about partnerships that are occurring at the federal and local levels that are enabling vaccine inequity for people with disabilities and older adults facing barriers.

I want to start by thanking all of you. Literally the thousands of people on the lines and all of the speakers for the tireless advocacy and hard work that you are all doing on behalf of the people with disabilities and older adults throughout the whole pandemic. And this, of course, includes everyone’s efforts to ensure that every person with a disability and older adults who wants the vaccine can get one. Partnerships have been absolutely critical to our shared commitment to vaccine equity. We just heard from the earlier speakers about how different communities are coming up with different partnerships and strategies at the state and local level. Work in Philadelphia being lead by disability rights advocates is different than the strategies that are being used in Missouri or in the Navajo nation. But our job at the federal government is to support and provide resources. To the partnerships that make sense in your own communities. At the administration for community living, we fund a network of disability and aging networks on the ground in communities across the country.

These are community-based organizations that provide direct services and advocacy. Many of you probably partner with them in your state. Like disability lead centers for independent living, area agencies on living, and ages and disability resource centers just to name a few. These local organizations are providing assistance in locating and registers for vaccines, providing transportation, providing in-person support for people who need that during vaccines. Helping identify people with disabilities and older adults who need to get vaccines in their own home. Working on accessibility of vaccine registration web sites and vaccination locations and importantly are providing education about the benefits of the COVID vaccine. As Karen mentioned at the top of the presentation, three weeks ago President Biden announced nearly $100 million in funding from the CDC to the administration for community living and for us to provide support down at the local level to these crucial disability and aging networks in your community. I just want to give a couple examples of how this funding is already making a difference.

So, for example, in my own community in northern Virginia, a center for independent living is working with the local public health authority to set up the vaccine clinic targeted for people with disabilities and their caregivers. With the focus on making sure those settings are accessibility to people with all types of disabilities. And in the Nevada we see an area agencies is unageing reach out and partner with their local health authorities and create vaccinations sites at places that have served as adult day centers prior to COVID to provide an accessible location to older adults. In Ohio they are working to ensure the state has accessible web sites for registration and vaccinations sites are physically accessible and provide accommodations to people. Very importantly disability — developmental disability councils and university centers are partnering with self-advocates across the country to make sure there’s plain language and easy read material explaining why the vaccine is important. We are trying to support the partnership that’s happening in your own ground on the states and communities. I’m going to turn it over to Linda to talk about the successes that we’re having at the federal level.

Linda: Thank you, Allison. It is my great pleasure to be here with all of you this afternoon. And to share some information. You know, for the first time in our nation’s history every state, every tribe, every territory was responding to the state disaster and the same event at the same time without the benefit of an extended preemptive planning effort. It requires really unprecedented interagency collaboration. Realtime responsiveness creating new end roads. We heard at the very beginning that we’ve reached 200 million shots in arms at day 90 of the first 100 days of the administration; right? And we’ve heard over and over again today the importance of collaboration and cooperation and partnership has meant to vaccine efforts and vaccine equity efforts across the nation. This would not have been possible at the level and to the extent that we’ve achieved these successes without the cooperation and without the collaboration of a whole range of federal, state, local, friable, territorial, non-governmental organizations, private sector partners, not any one of us could have done this alone. And over the last year and almost a half, there’s been an unbelievable amount of work put into the response and efforts needed to combat COVID-19.

We have joined together over the last many months looking deep at community demographics which you’ve heard about again from each and every presenter to make sure we reach the people who most need help, including people with disabilities. To make sure they have access to the information they need to keep themselves safe to keep themselves healthy. Providing translation and providing interpretation, American sign language; right? We’ve considered the needs of people with disabilities in every phase of the COVID response across the nation. You’ve heard it from every presenter today. We’ve deployed disability integration advisors from FEMA to vaccine sites across the nation and advisors to support the operations. We’ve convened the interagency b civil rights advisory group to consider and address the issues and concerns in the vaccine center roll out. We’ve worked together to make sure that accessible technology is available at the vaccines center to facilitate things like video remote interpreting for people who are deaf. We’ve trained on how best to interact with people with disabilities and facilitate the comfortable, accessible experience for everyone. We’ve disseminating a civil rights checklist for the partners to use as they set up vaccine froms to make sure that civil rights considerations for all including those with disabilities are addressed at every phase of vaccine site of implementation. They want to make sure people have a safe and comfortable experience with COVID vaccine. I would like to share a couple of examples as well.

In Philadelphia, for example, an expedited guest experience was implemented enabling people with intellectual and developmental disabilities to move quickly and efficiently through the vaccine center process. In Oakland, California, disability integration advisors helped ensure the pedestrian vaccination site was on the accessible public transportation route. And as a result of their efforts in Oakland as well a mobile unit was deployed to serve individuals with disabilities in the community. In another town there was a designated lane for paratransit vehicles so that people can be served in the vehicle or wait for the passengers while they went inside to be vaccinated. Again creating an accessible and comfortable experience with individuals with disabilities.

All over the nation as we’ve heard from virtually every presenter today there have been efforts to reach folks in rural and hard-to-reach areas. People who can’t leave their homes. Really efficient use of mobile units to make sure that people who wanted the vaccine and needed the vaccine could have access to the vaccine without worrying about leaving their home. And what this has pointed out to us again and again is the importance of the federal government, local government, state governments partnering with disability organizations and individuals with disabilities to understand the concerns that people with disabilities have to benefit from the creativity that people with disabilities offer in coming up with solutions to some of the barriers so that again that safe, comfortable, accessibility experience in getting the vaccine can be able to everyone. And so, you know, we’ve got all of the examples that we’ve heard today. Allison gave us some examples and we’ll continue to see more examples of this creative, innovative way that people with disabilities and disability organizations come to the forefront, offer their expertise and experience to help us in the federal government at state and local government do our jobs better when it comes to serving people with disabilities and helping them access the COVID vaccine.

Additionally, what’s been really great, I think, is that FEMA, the centers for disease central and prevention and administration for community living and others have really established a firm network of collaboration and cooperation. Really again in an unprecedented way to make sure that we’re not duplicating efforts and working together and we’re working collaboratively, excuse me, to outreach to disability stakeholders through each of our organizations calls. We’ve been on each other’s stakeholders calls and listening sessions and shared information and shared resources and the Centers for Disease Control and FEMA collaborated on a series of ASL videos on COVID-19. We work together to develop some common language defining disability for the purposes of COVID-19 data collection and to more effectively share information and resources with people with disabilities and their caregivers on COVID-19 and the vaccine efforts. So we’ve had just an excellent partnership, collaboration, cooperation, and really at every level.

Like I said at the beginning, really none of us can do it alone. We continue to work hard to come together to come up with innovative solutions to improve how we serve people with disabilities throughout this response. Now I’m going to turn it back over to Alison to talk about a really important call center initiative they have going to help people with disabilities.

Allison: Right. Thanks, Linda. As Linda mentioned, this issue was addressing the barriers and ensuring equitable vaccine access has been a whole of government effort with our goal on federal partnerships that help state and local organizations on the ground. So one issue that I want to make sure that people are aware of is we want to try to help find a way to help anyone regardless of where they live navigate and be able to access the supports that they need to be able to access the vaccine. As part of the partnership between CDC and the administration for community living, they provided support to us to help address barriers by expanding a national hotline that currently exists for older adults and to expand to to help people with disabilities. This current line is called the elder care locator. We’re going to be expanding it over the next few weeks with a rebranded name for the disability community. To help people with disabilities who need support in registering for vaccinations and to connect them with local disability and aging agencies and in their own local communities who can provide them support they need. Whether that’s transportation, in-person support, identifying whether a site is accessible, or for people who are unable to leave their own homes, getting at the vaccine in their own homes. We’re excited to be doing this. We want to do this in partnership with the disability community. We plan to reach out to many of you to help spread the word.”