Improving Social Connection Among People with Disabilities - Webinar Transcript

March 30, 2021

Kristie Kulinski (ACL): Hello everyone and good afternoon. My name is Kristie Kulinski and I am with the 

US Administration for Community Living and our Center for Innovation and Partnership. I am pleased to 

be facilitating today’s webinar, titled Improving Social Connection Among People with Disabilities. On 

behalf of ACL, we are grateful to everyone who has joined us today for their work to engage and 

connect older adults, people with disabilities, and caregivers. We know that it will take all of us working 

together to address social isolation and loneliness. A few housekeeping items, today’s webinar is being 

recorded and will be available within a few days at acl.gov/CommitToConnect and you can see the 

resources for states in the aging and disability network section. I’d also like to note that we are 

unfortunately experiencing technical difficulties with the Zoom captioning, but we will post a transcript 

with the audio recording on our website. I do sincerely apologize for the inconvenience. We will be 

setting aside time at the end of the webinar for Q&A with the presenters. Please type your questions 

into the chat box and we’ll keep the phone lines muted to cut down on background noise, but we will 

get to your questions at the end of all of our presenter’s presentations. Can I have the next slide please?

Today’s presentations will highlight current research on social isolation and loneliness for people with 

disabilities. Attendees will also learn about replicable strategies for social engagement and connection 

from the Center for Independent Living network. Next slide please.

So before introducing our presenters, I’d like to highlight a couple relevant announcements. First, I want 

to bring your attention to ACL’s Commit to Connect initiative, which is a national campaign to combat 

social isolation and loneliness in all communities. Please visit the Commit to Connect website to learn 

more. Additionally, an upcoming webinar on a National Network of Champions to Address Social 

Isolation is slated for mid-April. So please be on the lookout for registration information via an ACL email 

blast. If you haven’t signed up for ACL emails, please go to ACL.gov and make sure you are on our 

mailing list. Another webinar you may be interested in will be cohosted by ACL and the FCC on the 

Emergency Broadband Benefit. That webinar is scheduled for April 15th at 3pm and registration 

information is forthcoming. Next slide please.

And now I’d like to introduce our presenters. Sean Barrett is the Team Lead for the Office of 

Independent Living Programs within the Administration for Community Living at the US Department of 

Health and Human Services. In this position, Mr. Barrett coordinates management of four hundred and 

eight federal grants to community based organizations and states and territories across the country. 

Previous to this positon, he was a fiscal specialist for the Rehabilitation Services Administration and a 

program office in the Independent Living Unit. Before coming to the Federal Government in 2006, Mr. 

Barrett worked as a Director for a Center for Independent Living in Everett, Washington. He earned his 

MSW degree with a concentration in Administration from the University of Washington. Anne Ordway is 

a Program Specialist at the National Institute on Disability, Independent Living, and Rehabilitation 

Research or NIDILRR in the Administration for Community Living. Anne oversees disability and aging 

research and health policy research grant portfolios for NIDILRR. She is the program manager of the 

NIDILRR advanced rehabilitation research and training program, which includes 24 institutions of higher 

education and research, focused on preparing the next cadre of disability and rehabilitation researchers, 

practitioners, and policy makers. And finally, Maia Santamaria has served as the Executive Director of 
the Northwest Georgia Center for Independent Living since January of 2013. She has been with the 

Center since 2005. Ms. Santamaria has 40 years of leadership experience service through serving on 

boards and working with non-profits and holds a Bachelor’s of Science in Industrial Management from 

Georgia Tech. And with that, I’ll turn it over to Sean Barrett to get us started.

Sean Barret (ACL): Great, thank you very much. I will apologize that I will have to depart after my 

presentation, but I will try hard to come back before you are done. If someone could—I’m sure it will be 

in the transcript-- document questions if there are any for me. I will get back to them. First slide please.

Okay, great. The Office of Independent Program within ACL, also known as OILP. Next slide.

What I’m going to do is try to give you an overview of what the programs are. I’m going to focus 

predominately on CILs – Centers for Independent Living – but first, I’m going to give you kind of a 

broader overall picture. Independent living involves the philosophy, the culture and some Federal 

programs. Next slide please.

What is the Culture? The culture is a shared identity, shaped by a common history of oppression; the 

lived commitment to advancing the human and civil rights of people with significant disabilities; art, 

music, literature, and other expressions that individuals with significant disabilities create based on their 

lives and culture; and the pride, identity and purpose claimed by people with disabilities. And we totally 

stole that from Steven Brown, Ph.D., “What is Disability Culture?” Next slide please.

What are the programs? Independent Living Services—these are typically statewide programs. They go 

to the states and the states decide how to spend the money. Typically, they go to what are called DSEs –

Designated State Entities—which are often, but not always, the VR program. A lot of times they go to 

Centers for Independent Living. These go directly from ACL to Centers for Independent Living, funding 

the community based organizations for the purpose of providing independent living services, which we 

will talk more about later, to individuals with significant disabilities. Training and Technical Assistance—

we have a T&TA provider: ILRU. You can go visit them if you want. ILRU.org. And Section 21—these are 

programs to serve typically underserved populations. We actually have one right now I think in NIDILRR 

– about youth from diverse backgrounds transitioning out and we have one that deals with services in 

Native American culture. Next slide please. 

So that was pretty broad – that’s all of our services. So what is the purpose of the Rehab Act – the first 

act enacted [indiscernible]? To promote a philosophy of independent living, including consumer control, 

peer support, self‐help, self‐determination, equal access, and individual and system advocacy, in order 

to maximize the leadership, empowerment, independence, and productivity of individuals with 

disabilities, and the integration and full inclusion of individuals with disabilities into the mainstream of 

American society. Big stuff, big goals, lots of stuff. Next slide please.

So quick historical milestones. First CIL is in Berkeley, California, Ed Roberts. The Rehab Act passes in 

1973. Not putting in a plug, but if you haven’t seen the movie Crip Camp yet, there are a great series of 

scenes in there that talk about how that happened, on Netflix. Title Seven of the Rehab Act established 

federal funding for independent living. A year later, the first ten states received the Title Seven funding. 

1992 – that was a big year – the Rehab Act was restructured and creates the Part C CIL program and 

SILCs—we’ll talk about that in a second—which are Statewide Independent Living Councils were 
established. And then very recently in 2014, the Workforce Innovation and Opportunity Act. Next slide 

please.

So there you go. The philosophy, plus the culture, plus the programs, equals independent living. You 

need all three. Next slide please.

So what does it mean to be a CIL or work in a CIL? Consumer-controlled, cross-disability, communitybased, non-residential. So basically what this means is a majority of the staff, at least 51% have to be 

people with disabilities. People with disabilities are always considered the primary person being served, 

not the family members. Family members are certainly part of the environment, but encouraged to the 

greatest degree possible to have the person with disabilities be the person to drive the show. Next slide.

It is on Netflix, by the way—the last question in the chat [about the Crip Camp movie]. What are the 

core services? CILs must provide information and referral—where do I go? Who do I talk to? 

Independent living skills training. This can vary dramatically. It can be bus training, it can be interview 

training, cooking training, whatever you need. Peer counseling – quite often groups of people with 

disabilities who have faced similar issues or challenges supporting each other, helping each other learn 

through it. Individual and systems advocacy – it is exactly what it sounds like. Sometimes you help and 

work with the consumer to advocate for their issues, sometimes you work on a combination of issues 

and approach it from a more systemic level. I’m sure we’ve all have had experience with those. The last 

one, which is the last that was added is services that facilitate the transition from institutions to 

community living, diversion from institutions to community living, and transition of youth from 

secondary education to post-secondary life. So keeping people from getting into nursing homes, helping 

people get out of nursing homes, and helping people transition out of public schools basically, secondary 

education to life after school. Next slide please.

We also recently, as part of the Part C program – and I apologize, this is part of the reason I can’t be 

here for an hour –got a decent chunk of money to help address COVID-19 related needs. They are 

directed to utilize the entirety of the funds to respond to the COVID-19 pandemic and the surge of 

needs of individuals with disabilities to access or reconnect with the services and supports they need to 

remain safely in their communities. So CILs have money specifically designed to help people with 

disabilities meet their COVID-19 related needs. If you have any questions about that, it is super broad. 

There is an FAQ on our website [indiscernible]. If you are individual or consumer, I would just call your 

local site. There you go. The possible uses are very broad. Next slide please.

CIL CARES Act areas of emphasis are service coordination. Lots of CILS are spending a lot of time working 

with transportation providers and Medicaid providers and food bank to try to coordinate and make sure 

that their people have access. Services to increase the likelihood of people getting out of or not going 

into institutions, shortage of accessible housing, lots of partnerships around food, and even literally 

handing out food, and systems advocacy to ensure health equity in medical settings. Next slide please.

Want to let you know that this your OILP Team. Reyma Mccoy-Mcdeid is our new Commissioner and she 

is currently the Acting Director of OILP. Me, Team Lead. The project officers are Regina Blye, Kimball 

Gray, Veronica Hogan, Peter Nye, and Jennifer Martin. Regina deals with the state level stuff – and the 

other four are all directly tied to one CIL or another. Next slide please.
I’m going to give you some quick statistics from 2018 about what the CILs are doing. Fifty-five percent of 

the consumers are female, 48 percent identify as a minority, 43 are 25 to 59, and 39 are 60 years or 

over. So it’s pretty [indiscernible]. Next slide please.

Seventy-six percent of the board and 64 percent of the staff have a significant disability. Next slide.

So, we’ve talked a little bit about what the goals are. Goals are what the consumer needs to increase 

their independence, and services and what they do to accomplish them. Next slide please.

In fiscal year 2018, CILs provide 837,000 core services, almost 400,000 other services—the other 

services, I didn’t provide a list, because it wouldn’t cover everything. If you are a person with a disability 

looking for independence, frankly the core or other services –your goal or need will fit into one of them. 

72,708 goals were met. Those should be specific, concrete increases in a person’s independence. Next 

slide please.

Resource – our recent annual report that has a lot more statistics, graphics, and verbiage about the 

program. Also, anything –the disaster services FAQ I mentioned that is on the CIL page, the contact 

information—anything about our program, is at the CIL page on ACL.gov. Next slide please.

So that’s it. Thank you very much for the time. I hope that gave you an overview of what CILs are. 

Frankly, the other speakers are going to give you the concrete, how it’s actually fleshing out, so I need to 

take off. I’m hoping and planning and trying to come back as I am excited for these presentations as 

well. Thank you very much.

Kristie Kulinski (ACL): Terrific, thank you Sean. Jessica – could I have you go back to Anne’s opening slide 

there. Prior to turning to turn it over to Anne –I know one of our other speakers was having some 

technical difficulties, but I think we have her on the phone now. Maia Santamaria, I just want to make 

sure we have your audio now so that when Anne wraps up we can turn it right over to you. You may be 

muted.

Maia Santamaria (NWGA CIL): Hi, its Maia.

Kristie Kulinski (ACL): Oh, wonderful. Welcome, Maia. Great, we wanted to make sure we had you on 

the line. I am going to turn it back over to Anne now and then Maia, we’ll hear from you once Anne 

wraps up her presentation. Thank you so much.

Anne Ordway (ACL): Okay, here I am, the research sandwiched in between the two presenters on 

services, so here we go. Stay on this slide. Today, there is no shortage of information on social isolation 

and loneliness with the continuous push of information through our email and social media on the topic. 

This webinar on social isolation among people with disabilities is part of ACL’s ongoing effort to shine a 

light on a very important issue that has received increased attention since the start of the COVID-19 

pandemic, and to provide information and resources to keep all of us connected. In my section of this 

discussion, I’ll give a brief overview of what we know from research about social isolation and loneliness 

on people with disabilities and after my discussion, we’ll hear about strategies to keep us connected 

from the perspective of a disabilities service organization. Next slide.

We have a biological need for social connection and since the start of the COVID-19 pandemic, all of us 

have experienced the changing nature of social connections and have many of us have gained personal 

insight into what it means to be socially isolated, lonely, or both. These aren’t new concepts that have 
resulted from the pandemic, however the pandemic has likely made worse our experiences with social 

isolation and loneliness and challenged our beliefs about who is socially isolated and lonely. We have an 

opportunity to build on the current imperative to address the social impact of COVID-19 and to 

understand the experience of social isolation and loneliness for all individuals. Next slide.

Social isolation and loneliness are different concepts and don’t necessarily occur to together. Social 

isolation is object. It is often defined as the state of having few social relationships or infrequent social 

contact with others. On the other hand, loneliness is subjective. It is often defined as a feeling of being 

alone regardless of the amount of social contact. It is our perception of both the quantity and quality of 

our social relationships. I can be surrounded by people, but still feel lonely. Loneliness isn’t a steady 

state condition, which means feelings of loneliness can vary in frequency, duration, and intensity. We 

can’t tell whether someone is lonely by looking at them. It is important to note that it is possible to 

make a decision to be alone. We call this solitude, or a word that I really like: “oneliness.” It is a positive 

affirmation for being alone. We can’t assume that someone who is alone, is lonely. Next slide.

It is important for researchers to focus on social isolation and loneliness. Social isolation and loneliness 

are not only negative experiences, but also, according to the research, are consequential to our mental 

and physical health. Before the COVID-19 pandemic, social isolation and loneliness had been identified 

as a public health concern in the US and internationally. Findings from national studies indicate that 

social isolation and loneliness are associated with adverse health outcomes comparable to other risk 

factors, such as smoking, lack of exercise, obesity, and high blood pressure. Social isolation and 

loneliness are also associated with increased morbidity and early mortality. The estimates of how many 

people in the US experience social isolation and loneliness vary. Some findings from US national surveys 

indicate an increase in social isolation and loneliness since the start of the pandemic. There have been 

reported estimates as high as two-thirds of adults having experienced social isolation, while younger 

people report higher levels of loneliness. Next slide.

There is still a lot that we don’t know about social isolation and loneliness. And there are significant 

limitations to at least pre-pandemic research studies on social isolation and loneliness as they relate to 

disability. Most of the research studies on social isolation and loneliness before the pandemic were 

focused on older adults. Social isolation and loneliness were treated as issues primarily for this 

population. Many of these pre-pandemic studies did not have questions on disability, which isn’t to say 

that people with disabilities weren’t include in the sample of research participants. We simply don’t 

know because the questions weren’t asked. And for the studies that did include questions on disability, 

disability was often included as a risk factor for social and loneliness. So to drive home this point, a rapid 

review of about 1,600 research studies found a lack of research early in the pandemic on the impacts of 

COVID-19, including the social impacts, for people with disabilities. Next slide.

I guess this begs the question – what do we know about social isolation and loneliness for people with 

disabilities? I want to begin this part of the discussion by acknowledging that the experience of social 

isolation and loneliness for people with disabilities is complex given our history of social exclusion and 

marginalization of people with disabilities. And while I won’t talk about it today, what we know about 

the risk and protective factors for social isolation and loneliness for people with disabilities must be 

considered in this context. Preliminary findings from research studies conducted before the COVID-19 

pandemic indicate that some people with disabilities are at an increased risk of social isolation and 

loneliness. For example, individuals with traumatic brain injury, spinal cord injury, and serious mental 
illness reported higher levels of loneliness pre-pandemic than those without those diagnoses. There are 

few published studies of social isolation and loneliness for people with disabilities in the context of 

COVID-19. Therefore, we know little on the current trajectory of social isolation and loneliness for 

people with disabilities. However, similar to people without disabilities, studies have found that younger 

people with disabilities are more at risk for loneliness during the pandemic. And at least one study found 

that urban residents with disabilities reported feeling more isolated than rural residents with disabilities. 

Incidentally, findings from studies on people without disabilities are similar. And while I’ve talked a lot 

about the lack of published studies on social isolation and loneliness for people with disabilities during 

the pandemic, we do see the tide changing as new novel surveys are developed to capture data on 

COVID-19 for people with disabilities and include questions on social isolation and loneliness. So, some 

of these surveys include the COVID-DIS from the University of Michigan, and the National Survey on 

Health and Disability from the NIDILRR-funded collaboration on health reform and independent living. 

Next slide.

Here is a twist. Whether we use the terms social participation, community living and participation, or 

community integration, we have been researching social isolation for decades. NIDILRR, specifically, has 

sponsored research on the barriers to social participation, the benefits of social participation, and 

interventions to promote social participation for people with disabilities. I’m not claiming that social 

isolation and social participation are the same concepts. The framing is different. None the less, when 

we discuss the next steps for research and services to address social isolation and loneliness for people 

with disabilities, we have a substantial knowledge base to draw from. Unfortunately, the current 

framing of social isolation may overlook the substantial knowledge base. I encourage disability 

researchers who hopefully are on this webinar today to use this current framing of social isolation and 

loneliness so your research gets noticed. Next slide.

As I’ve said many times today, there’s a lot more we could know about social isolation and loneliness for 

people with disabilities. Since we have an immediate need to address people’s connection, I’ll focus on 

intervention research. Previous research on social isolation and loneliness for people without disabilities 

and social participation for people with disabilities has demonstrated that social isolation and loneliness 

are amenable to change. There is little research to date on the most evidenced-based interventions to 

address social isolation and loneliness and the related health effects. However, we need these evidencebased interventions for now and beyond this stage in the pandemic. And we know that sustainability of 

an intervention is a crucial factor in its long term effectiveness. Next, a range of interventions in social 

isolation and loneliness should be considered, including individual-centered, family-centered, and health 

care provider or system-centered interventions. And finally, the COVID-19 pandemic has increased the 

saliency of remote or digital interventions. The comparative effectiveness of in-person social connection 

interventions versus remote and/or digital interventions is an area for future study and will require 

attention to the preferences of individuals with disabilities as well as their contextual factors. Any of you 

who are engaged in intervention research know that the most effective intervention is typically the one 

most relevant to the individual. Next slide.

This concludes my section of today’s webinar. Please contact me with any questions on what I have 

presented today, including the references for the studies cited, as well as information on the work of 

current NIDILRR grantees in the domains of social isolation, social participation, and loneliness. You can 

visit NIDILRR’s online, searchable database at NARIC.com to find informational products from NIDILRR 
grantees on these topics. And now, I would like to turn your attention to our main presenter, Maia 

Santamaria, the Executive Director of the Northwest Georgia Center for Independent Living.

Maia Santamaria (NWGA CIL): Hello and thank you so much. My presentation will definitely 

substantiate much of what Anne just said and you will see the direct on-the-ground approach that Sean 

was talking about with regards to Centers for Independent Living. So, our approach – I mean every 

center is different so I can’t say this is what every center does, but at our center, which is in northwest 

Georgia, we consider peer support the foundation of all our services. So we’re approaching this from the 

viewpoint of using peer support as the foundation for addressing social isolation among individuals who 

have disabilities. Next slide please.

Okay I’ll tell you a little bit about our center. Our mission is not that different from everybody else’s. It’s 

“to empower people who have disabilities so that they can determine their own future and to work 

towards a more user-friendly accessible community.” As Sean pointed out, each center is grassroots and 

it depends on what the community really needs. We serve 15 counties in northwest Georgia. Next slide. 

At our center, it says 51% or 74%, as we’re cited, of people having disabilities. We currently have 100% 

of our center staff having disabilities – staff and management. We are a very small, experienced, and 

passionate team. We’re able to provide peer support because each of us, I mean every one of us, could 

provide peer support and do. Next slide please.

Sean did a really good definition of peer support and what I will talk about with the way we do it is that 

we don’t match a person for example, who’s blind, like I am, to another person who’s blind. We match 

what goals a consumer has with a staff person who has had the experience of either reaching that goal 

or working towards achieving that goal. And that’s also sometimes in peer support called “peer 

mentoring”. And we provide it – I’m sorry, I’m a little lost in my notes here – thank you. We provide peer 

support to consumers and always have. We’ve also always provided it to each other – our staff or board, 

our management. And we provide it to community partners who are consumer-led. We’re having more 

and more of them in our community and we’re very proud of that because we kind of started it so that’s 

a good thing. Next slide please.

So that’s how we’ve been doing it, that’s what we believe. And then enter the COVID-19 pandemic. Here 

we were, building the airplane as we’re flying it. Everybody across the world is doing that. So our first 

thing that we had to do is had to change our infrastructure. First priority, at least to me as director, was 

to keep our team, our staff safe and healthy. If we weren’t safe and healthy, how on earth can we help 

anybody else? And at least where I live, people were coming down with COVID and dying from COVID 

right and left. It was pretty horrible. So we had to develop a remote working culture. Now this included 

providing equipment – thank you to the CARES fund very much. And we have learned new equipment 

and had to learn new platforms, digital ways of doing things that we haven’t done before, such as Zoom. 

We had to interestingly incorporate in some funds into our budget. Now it’s fabulous that we have the 

money – that’s great. But we also had to budget for it to make sure we were using it responsibly. Getting 

the accommodations for staff at home. And changing policies. All of those things we were kind of doing 

as we were going. But, concurrently, we had to have our first response to COVID and our consumers. So 

focus groups, yes of course, touching base with our own consumers. Calling them, “how are you?”, 

“what’s going on?”, “what do you want?”, “what do you need?”, you know, “do you want to hear from 

us?” – yes yes yes we want to hear from you. Well okay, that’s cool. We set out to find accessible PPE. 

As I have two staff who are deaf, we had to make sure that whatever platforms we used were 
accessible. And we had to make sure our community was supplied with masks, clear masks, so that 

people who read lips could be able to access their services they needed from our hospital. We reached 

out to our community partners. Sorry. We reached out to – we were the first to be able to reach our 

paratransit system to provide masks to them for the riders and the drivers. And there’s a new day 

shelter for people who are housed in our community and we’ve been able to help them with food and 

PPE and sanitizing products. We’re kind of ongoing with that because so many people they serve have 

disabilities. But if we were reaching out and touching people in the community this way and our 

consumers, we found that our contacts with people were taking more and more time. We could easily 

spend an hour or more talking to an I&R or talking to a consumer or just talking to somebody in the 

community. That thirst for connection grew steadily as the pandemic progressed. We also found they 

wanted group interaction. It wasn’t just “Oh I want to talk to you”, it was like “Oh you know other 

people like this? Yes. Can we hook up? Yes.” Next slide please.

So this evolved to weekly peer check-in calls. We had to provide the technology and training to 

consumers and teach the accessible platform of Zoom. I’m very thrilled we were able to teach a 

gentleman who is deaf and blind, not completely, totally in both of those senses, but enough that he 

requires a lot of accommodations. We still were able to teach him how to use Zoom and he was totally 

thrilled. Our peer support calls, they’re always safe spaces, I mean everything we do is confidential. But 

our peer support calls turned into Vegas. It’s like what happens here stays here. We don’t talk about it 

with other people. This is a very safe space. We even had to ask a few people to leave when they’ve got 

in inappropriately or one day were becoming too negative or derogatory to others in the group. Just 

because you have a disability doesn’t mean necessarily, you know how to behave unfortunately. And I 

don’t mean that in a behavioral sense, I mean just in the sense of common courtesy. So safe space is 

critical. We also tried to provide the most up-to-date, the most accurate scientific and medical

information on COVID and the COVID virus. But I think to me, the best part really was that it really didn’t 

matter who called in – it was interesting – community members were calling in, other organizations 

were calling in, consumers were calling in. Everybody was okay with that. There were no violations in 

confidentiality. Everybody was grateful to hear from anybody else. And we all shared everything. As 

staff, as management, as board members, as consumers with other community organizations. These 

peer calls turned into a community peer call. And we shared information, we shared our stories, we 

shared our fears, we shared our strategies for dealing. We all learned from these. They’re still ongoing, 

we haven’t stopped any of this. Next slide please.

Peer support, as you can see, we were using for everyone, not just for the consumers. We realize how 

much our team needed each other. It was kind of interesting, you know, typically we have a staff 

meeting – this is pre-COVID – we have a staff meeting once a week, couple hours to touch base and run 

ideas by, etc. Our team is small, we don’t have – we have no more than nine people and most of them 

are part-time – well no, not most. Almost half are part-time. So we realized these weren’t enough. Our 

staff actually asked to have more team meetings and they turned out to be fantastic. We do them twice 

a week now – we have a management meeting for two hours and two 2-hour staff meetings. That 

sounds excessive, but it’s really not. We work through everything, we support each other. We – I can’t 

emphasize to you how much we have needed peer support as much as our consumers have. We’ve also 

been left – we received peer support from other CIL directors, our state CIL directors typically meet once 

a month. And we’re a good group. And we can reach out anytime we need to. But part of our monthly 

calls is focused on us peer supporting each other. We get peer support from ACL, APRIL [indiscernible] –
everybody across the country. CIL calls that we have across the country, those are awesome too. We 

exchange peer support with our collaborative partners. There have been a lot of new groups growing up 

in our community since COVID. One of the really positive aspects, if you will, of COVID is that, due to the 

digital platforms, we have we are able to meet more with more community partners and to strategize 

on how to best serve our community. Before then, there was travel time – I was shocked some people 

do 2-3 zones at a time. Sometimes I’m on one thing for the next all day and that’s a little much, you 

know? I didn’t know my brain could pant, but it actually does by the end of the day like I’ve been 

running. But it’s a good thing because these kind of partnerships, most of us haven’t had time to focus 

on even though they’re critical. Next slide please.

So as time goes on with this, we began to recognize the impact of social isolation, not only on people 

who outwardly say they have mental health issues, but on people who have never considered 

themselves to have that. I’m thinking of a person who I know very well, it was probably one of the most 

mentally and emotionally balanced or stable or whatever type of term you care to use, that I’ve ever 

known. And even he, I was watching him, and it’s like, you’re showing signs of depression. And he was 

like “What?” but we went over it and he really was so he was able to get some help. So it really doesn’t 

matter. But COVID, the isolation has affected everybody. I have not talked to a single person, my staff 

either, who has not been affected one way or another by social isolation. Even people who are – what 

was that beautiful term Anne said – [indiscernible] even they, like oh my gosh, I’m alone too much. This 

is too much for me. Let me out. Let me see somebody. Let me do something. It really does affect, I think, 

everybody at some level or another. It’s far worse on those of us who have disabilities because we 

already have incredible challenges getting beyond now and being able to be part of society. But then 

you throw the pandemic on with some force – literal isolation – it’s extreme. So the first thing we did 

was understand that our emergency preparedness obviously had to turn inwards because we were 

preparing in staying home. But also needs to focus on people who have mental health issues and how 

do you handle that. So the October APRIL conference we were honored to be chosen to present a 

workshop which was on rural mental health – I’m sorry – mental health emergency preparedness in 

rural communities. We also were really fortunate to hire a staff person with the CARES fund. Hopefully 

we’ll be able to do a workaround and keep them after that. But she is not only a certified IL peer 

supporter with that training, but she’s also a certified mental health peer support. And she has been 

able to bring us new consumers to solidify and even extend some of the relationships with other 

organizations and providers who help people who have mental health issues, substance abuse, other 

types of abuse, anything that is traumatic to your mental and emotional wellbeing. And so that’s been a 

real, real blessing for us to have somebody who could help with that. Next slide please.

Then we ran into the holidays. Well I don’t know about y’all, but holidays are very stressful, even if you 

have the best family and best friends and y’all are supposed to be together and it’s absolutely fantastic, 

but holidays are stressful. When you add that on top of that, you add COVID, where all our holiday 

traditions are turned upside down and we’re even more stressed. So in addition to our peer calls, we put 

on two events. The first was “Coping with the Holidays” – during that, we went forward and addressed 

depression, anxiety, and panic head on and we talked about recognizing the signs of it, when to seek 

help and where, and tips for coping, coping strategies with it to help get through a lot of events of 

holidays that are a little too much for a lot of people. After that, we put on a much more positive looking 

– the computer is behaving right now – we put on a more positive event called “Celebrating the 

Holidays”. And during that, we concentrated mostly on food while it was a very positive event, it was 
talking about “what is your favorite holiday?” – I mean all year what’s your favorite holiday. What do 

you think of holidays? Do you celebrate holidays? What was your favorite, most memorable favorite 

holiday? What was a funny thing that happened on a holiday? And we sent all of our consumers, all the 

staff compiled their favorite holiday recipes and sent them a little recipe book and we talked mostly 

about food. I think almost all that time we just talked about food and by the end we were drilling 

because everybody loves food. Next slide please. Now that vaccines are here, everything is just shifting 

again. We need to focus on different topics now. We have to educate people about vaccines. There are, 

there’s a lot of misconceptions, a lot of disinformation, a lot of different fears among different 

marginalized communities so we need to educate about that. And we understand or respect that not 

everybody is going to get a vaccination, but we help them think it out. Also a lot of people think, “Oh I 

got my vaccine, I don’t have to wear a mask.” Well think about that. Of course we also live in an area 

where a lot of people didn’t wear masks anyway and that was its own challenge. So we started offering 

our courses again via Zoom. I’ll be honest, not being attended the same way as when we offered them in 

person but we’re trying to put anything out there that might attract somebody to help break the social 

isolation. We’ll have to transition our team to working in the office. Everybody is like, “Oh yay I love 

working from home” except well, in this consumer contact, can we work from home and just to 

consumers? We have to think about what are the best practices that we’ve learned from COVID and 

incorporate them in.

Kristie Kulinski (ACL): Maia this is Kristie. I apologize for the interruption. I just wanted to give a twominute warning, we’ve had some questions come in and I want to make sure we can address some of 

them.

Maia Santamaria (NWGA CIL): Okay. Let me just really, really quickly – I apologize – challenges we have 

faced is engaging staff and consumers in nursing facilities. They’re on lockdown. The digital divide –

there’s been not much way to reach people who don’t have consumer – sorry – technology. Also lack of 

transportation, that’s chronic and it’s worse. Lack of housing or communities in crisis with housing. 

Lessons we’ve learned, we’ve learned a lot of cool ways to interact, we have learned more than 

anything. We have learned that not only does peer support work, process is the only way – it really has 

been getting through this crisis, getting us through this crisis, this pandemic. And I’m sorry I talked so 

much, I thank you.

Kristie Kulinski (ACL): Maia, please don’t apologize. That was a fantastic presentation. I want to thank all 

of our presenters – Maia, Sean, and Anne – for their terrific presentations. I know I learned a lot. It’s 

been great seeing not just the questions coming in through the chat, but you all are engaging with one 

another and providing additional context and information even through the chat so this is fantastic. I 

would like to spend a few minutes addressing some of the questions that came in. I think the first 

question will be for Anne – Anne, since loneliness is subjective, while social isolation is more objective, 

the question is should we focus on developing and testing interventions to reduce social isolation versus 

reducing loneliness.

Anne Ordway (ACL): Yeah, that’s a good question. I don’t think it’s a one or the other approach. 

Meaning because they’re different concepts, we need to develop and test interventions for both social 

isolation and loneliness. An intervention for social isolation may do nothing to address loneliness as I 

said before, they don’t necessarily co-occur together, but they can. So both routes are necessary.
Kristie Kulinski (ACL): Thanks Anne. And a quick follow-up to that one, one of the comments that you 

made early on in your presentation regarding urban versus rural and you know, noting that urban 

residents are feeling more isolated than rural residents and why is this and I noticed that some 

individuals had included some links to additional research in the chat, but wondering if you could touch 

on that.

Anne Ordway (ACL): Actually, this is a great opportunity to promote a NIDILRR grantee’s work which I 

cited. And Catherine, if we could unmute Catherine, Catherine maybe you could address this because 

you did the research.

Kristie Kulinski (ACL): And Catherine I think you can unmute yourself if you like. You’re not hard muted.

Catherine Ipsen: Here it goes. Can you hear me?

Kristie Kulinski (ACL): Yes.

Catherine Ipsen: Yay. Technology works. Yeah we have done some research because we’re the rural 

center, we have looked at geography and how geography impacts experiences, one of them being social 

isolation and loneliness, which was pre-COVID by the way so it wasn’t research that was done in the 

midst of COVID. And there really were these kind of odd impacts or differences between rural and urban 

folks, where urban folks had a much, kind of speaking to what you were saying Anne, urban folks had a 

broader network of social connections and yet recorded higher levels of feeling lonely. Whereas rural 

people had kind of these more narrow social networks that kind of more objective quantity, but then 

also didn’t have the subjective intensity of feeling lonely. From my perspective, and this is not empirical, 

I think that loneliness, or not empirically based on what our paper was about I should say, loneliness is 

because it’s subjective, I think you’re always looking at a referent group in judging like, I don’t know I 

miss the TV until everyone has a TV and I don’t. Or that sort of thing. And I think that goes on a little in 

rural. And someone in the chat, I think it was Margaret Campbell, suggested there is a self-selection bias 

and that rural people kind of, by their very definition, go to places where they don’t really are crowded 

by people and I think that makes sense too. I mean I get that. I’m pretty social and I don’t like huge 

crowds and that’s why I moved away from Seattle, like that was good. So anyway that’s all I really have 

to share with you.

Patricia Gibson: I wonder what rural animals would play – perhaps there’s more animals in the rural 

locations that people interact with.

Kristie Kulinski (ACL): That’s an interesting question. I would like to close us out with a question that 

was specifically for Maia. Maia, what parts of your efforts to address social isolation and loneliness at 

that stem from the pandemic do you think your Center for Independent Living will maintain as you 

know, we will transition out of pandemic response mode and into our, and I’m using my air quotes here, 

our “new normal” mode? What do you think you’ll continue doing that you started doing during the 

pandemic?

Maia Santamaria (NWGA CIL): Okay, I think we will continue offering using the Zoom platform as well as 

in-person. I definitely can see that continuing. As long as people want the peer support calls, we will 

definitely continue those. We’ll slowly continue, we may even modify how we actually do partially from 

home, partially in the office. Different staff may have different roles to play that way. I don’t want us to 

go back to the way we were because there are methods we definitely learned.
Kristie Kulinski (ACL): Absolutely. Thank you and I’m recognizing that we are at 3:59 east coast time and 

I want to be respectful of everyone’s time. Thank you so much to all of our participants who joined us 

today, to our esteemed presenters who shared their knowledge and expertise. We really do appreciate 

and value your time. As we noted earlier, we’ll make sure the recording, the slides, and a transcript of 

this webinar are posted on the ACL.gov/CommmitToConnect website within the coming days. So thank 

you very much and have a wonderful rest of your day.