Partnering with People of Lived Experience: What We’ve Learned

IGH Community of Impact

Reese Hagy and Julia Wagner

10 March 2022

Centering the Voices of Experts by Experience

Our most recent event for the IGH Community of Impact Webinar Series highlighted the importance of partnering with people of lived experience. We were honored to have such impactful and powerful speakers and moderators for the webinar.

Moderator: Rob Robinson, Partners in Dignity and Rights

Speakers:

Alicia Vázquez Silvera, Colectivo Ni Todo Esta Perdido

Big Al Connolly, Kommuniti

James Koshiba, Hui Aloha

Lindsay Pacheco, Ka Po`e O Kaka`ako

We recommend you watch the Youtube or listen to the audio recording. You can access additional resources and information about this webinar series on IGH’s Community of Impact website. Below are highlights from the discussion and a short resource guide on partnering with people of lived experience.

“The time is now to hit the reset button; we do it by having these international conversations. Housing should be the right of all global citizens.”

— Rob Robinson, Partners in Dignity and Rights

Rob Robinson of Partners in Dignity and Rights in New York City, served as the moderator for the Partnering with People with Lived Experience Webinar. Rob started the event by describing his time being homeless, and how it changed the way he looks at the world, and made him rethink what he was taught. Rob stressed the destructive pipeline he has witnessed, “Gentrification leads to displacement which leads to homelessness which leads to criminalization. There is a predetermined path for some people, which included black, brown, and poor people in United States…one of the ways to change things is by changing narratives, and to stop blaming the individual.” Homelessness is a societal issue, a result of poverty and a failure of public systems. Rob also stressed the importance of housing as a human right, and the need to house people first and then bringing in the supportive services.

Big Al Connolly of Kommuniti in Perth, Australia discussed the importance of national and local governments acting on the issue of homelessness and the need for housing. In Western Australia, there is a budget surplus, but there are also many people living in poverty and on the streets. Homelessness is a breakdown of democracy and community values. Housing also needs to be wrapped around with the support services and job creation opportunities. It is very hard to get a job without housing, so housing has to come first.

“It should be an inherent right to have a roof over your head. We have to make sure we’re not just writing prescriptions for the symptoms and look at the drivers of homelessness.”

— Big Al Connolly, Kommuniti

Lindsay Pacheco of Ka Po`e O Kaka`ako in Honolulu, USA talked about her experience in Hawaii, where she lived in an encampment for eight years, and now is a recipient of Housing First placement along with being enrolled at the University of Hawaii for her social work degree. Lindsay dedicates her time to advocate for the rights of people living on the street, support the community, and work to get people the services they need.  Lindsay described how in Hawaii, anywhere on the island they call the land, Āina, home. So people are houseless, not homeless. Many native, Hawaiian people are outpriced from living in their home, so many people have to leave the island. Native people should never be pushed out by government policies, and because they are outpriced. Native people have a right to their home, their land, and their community.

“Trust, consistency, and honesty are most important to people with lived/living experience”

— Lindsay Pacheco of Ka Po`e O Kaka`ako

James Koshiba of Hui Aloha in Honolulu, USA talked about the importance of tapping into the leadership within homeless encampments, and connecting to the people who are connected to local resources within that community. When leaders who are houseless come to public forums, their voice disrupts stereotypes and shift priorities for the better, making new solutions possible. Policies and strategies need to be directly informed and led by people of lived experience. Criminalizing homeless negatively affects progress and people who have been criminalized for being homeless have difficult accessing housing and services. The punitive criminalization of homelessness does a lot to disrupt people and set them back.

“The only way to really learn about the issue homelessness is to build relationships with people living on the streets.”

— James Koshiba, Hui Aloha

Alicia Vázquez Silvera of Colectivo Ni Todo Esta Perdido (NITEP) talked about the breakdown of her home after both her parents passed away suddenly. After, she helped people, without having her help returned, and she ended up on the streets. She would wait hours for services, and she was required to go psychiatrist to gain entry to a shelter, even though she felt mentally well. She made money by being a car guard and begging for money and food. She was introduced to NITEP, a collective to help people who are homeless, run by people of lived experience, students, and university members. Through NITEP and IGH, Alicia was voted to go to the United Nations Commission on Social Development to talk about the importance of affordable housing for people experiencing homelessness. Alicia, now has a job, and is living at a motel, and looking at apartments, and is talking with a psychologist to work through her trauma. She feels like she is rising and doing better, and thanks NITEP for their support and advice. She now feels great that she is able to give back to the NITEP collective.

 “Home is living, happiness, peace of mind, its comfort…it’s everything. Home is everything.”

Alicia Vázquez Silvera of Colectivo Ni Todo Esta Perdido

Partnering with People of Lived Experience Resource Guide

What does it mean to partner with people of lived experience?

Partnering with people with lived experience of homelessness is critical to having a comprehensive homelessness response and leads to more inclusive programs and better outcomes for all clients. Therefore, centering the voices of experts by experience is important at every level of homeless programs: in leadership roles, hiring, advisory, and research.  People with lived experience are uniquely positioned to provide important insights on homelessness interventions including identifying shortcomings in programs, improving homelessness systems, and developing more equitable and effective programs. Additionally, these individuals can provide invaluable assistance in peer support roles and help similarly situated individuals overcome homelessness in various ways.

Partnering with people of lived experience goes beyond merely paternalistic or tokenistic measures that only superficially take them into account. Rather, this approach requires substantive involvement and providing individuals with lived experience with opportunities for participation as equals in the process of solving the problems that affect them. 

“Changing narratives and creating solutions to homelessness requires people with lived experience to be at the CENTER of the conversation, leading — not just at the table.”

— James Koshiba, Hui Aloha

Why is ‘lived experience’ important?

Research suggests that there are many benefits associated with partnering with people with lived experience of homelessness. Various studies have investigated the impact of inclusion of people with lived experience of homelessness from different angles. In short, these studies have found:

  • Participatory interventions – such as making decisions related to day-to-day shelter operations or having a say in shelter programming – can have positive outcomes related to physical and mental health; strengthening social bonds; and improved sense of empowerment and hope. 
  • The unique situational knowledge that people with lived experience of homelessness possess can make them exceptionally effective at identifying deficiencies in methods of homelessness service provision. 
  • People with current or previous lived experience of homelessness are well-positioned to connect with similarly-situated individuals, thereby making them particularly effective as role models, mentors, and intermediaries.

How to incorporate people with lived experience

“Solutions to end homelessness should be shaped and led by communities.”

— Rob Robinson, Partners in Dignity and Rights

Partnering with people of lived experience can be approached in a variety of ways, including:

  • Staff and peer support roles: individuals with lived experience can play a critical role in helping program participants adjust to programs, navigate their recovery, and integrate into the community. Peer specialists can also act as intermediaries between program participants and other team members.
  • Leadership roles: people with lived experience can serve in executive roles such as on boards of directors or governing committees.
  • Co-production: this occurs when people with lived experience of homelessness work to design the programs and services they use through collaborative, power-sharing relationships with those who administer the programs. 
  • Advisory roles: individuals with lived experience of a certain situation (e.g., homelessness) can be convened to give input on how to address issues relevant to that situation. This can occur through semi-permanent mechanisms such as lived experience advisory boards or more temporary mechanisms such as focus groups. 
  • Community-based participatory research: this is an approach to research where the community being studied collaborates closely with researchers as co-investigators to establish goals, shape the design of the research, and assist with implementation. 

It is important to be part of a network of people with lived experience and being given the platform to share expertise, through partnership.

— Alicia Vázquez Silvera of Colectivo Ni Todo Esta Perdido

Removing barriers to partnering with people of lived experience

“If service providers really want to help people, be consistent, and stay consistent.”

— Lindsay Pacheco of Ka Po`e O Kaka`ako

With all these approaches, it is important for organizations to reduce barriers and obstacles that may be associated with partnering with people of lived experience. Barriers to successfully partnering with people of lived experience identified by research include negative attitudes of service providers and staff; stigma, discrimination, and disrespect; and feelings of apathy or that participation is futile due to previous negative experiences. Power imbalances may also play a role, as people who depend on homelessness services for survival may be reluctant to speak up about a problem out of concern that they may lose access to resources. Finally, time and resource constraints may also be an obstacle, especially for people who are currently experiencing homelessness.

Given these challenges, programs and services that partner with people of lived experience should prioritize the following: 

  • Ensuring that people with lived experience are incorporated as equals and that partnerships are structured in such a way that power is shared.
  • Equitable compensation for the time people of lived experience contribute.
  • Allocating adequate resources for training and capacity/skill-building that allows individuals to serve in their roles effectively.
  • Flexibility and support to ensure that partnerships are feasible (e.g., childcare, transit assistance, meals, etc). 

Additional Resources for partnering with people of lived experience

Built for Zero Canada. (2022). Peers and Lived Experience. 

USICH & HUD. (2021). HUD Guidance: Engaging Individuals with Lived Experience. 

Lived Experience Advisory Council. (2016). Nothing about us without us: Seven principles for leadership & inclusion of people with lived experience of homelessness. (2016). The Homeless Hub Press. 

Greater Victoria Coalition to End Homelessness. (2017). Engagement Toolkit. 

Homeless Link. (n.d.). Co-Production Toolkit. 

Schoenfeld, E. A., Bennet, K., Manganella, K., & Kemp Gage. (2019). More than just a seat at the table: the power of youth voice ending youth homelessness in the United States. Child Care in Practice 25 (1), 112-125. https://doi.org/10.1080/13575279.2018.1521376. 

www.alohaliveshere.org

www.facebook.com/puuhonuaowaianae

Data and Collective Impact During COVID-19: What We’ve Learned

IGH launched our Community of Impact (CoI) to connect leaders and practitioners to a collaborative and dynamic global network of knowledge of what works in ending homelessness. COVID-19 has represented an enormous challenge as the pandemic has had a disproportionate impact on vulnerable populations especially people experiencing homelessness. In our first Community of Impact Webinar, we were honored to have three speakers who discussed how data and coordinated responses allowed their communities to adopt quickly and effectively to COVID-19 in order to protect and house people experiencing homelessness. The three speakers were:

  • Jeremy Swain, UK Advisor for the United Kingdom Ministry of Housing, Communities and Local Government
  • Dr. Surashree Shome, Senior Manager at Azim Premji Philanthropic Initiatives
  • Molly Seeley, Special Projects Manager for the Institute of Global Homelessness

The video of the webinar can be found here. From Great Britain to Bengaluru, India, the speakers’ presentations had common themes in their presentations:

  • Strong leadership with multi-sector coordination including the formation of taskforces resulted in improved communication, collaborative action, and led to better outcomes, and 
  • disaggregated data allowed leaders to better understand the scope of the impact and design new initiatives that are more inclusive and better targeted to specific populations.

Below are key takeaways from each of the speakers.

Building a multi-sector COVID-19 response to achieve better outcomes

With sheltering at home being the first line of defense during COVID-19, robust strategies were needed to protect and house rough sleepers. Our first speaker, Jeremy Swain, discussed Great Britain’s  ‘Everybody In’ initiative, where they temporarily housed 15,000 people, 95 percent of the homelessness population, in self-contained accommodation including hotels. This initiative was accomplished through leveraging extensive existing data on street homelessness and a coordinated, multi-sector approach. Joint efforts between the homelessness and healthcare sector were key to providing support services. The healthcare sector was very engaged in collecting detailed health data to improve current and post-pandemic support, which was crucial when people left temporary accommodation they had a specific health outcome and package of support, which would not have happened before COVID-19.

“We can bring together different systems to get outcomes around health that we didn’t manage to achieve before.”

Data was also important to understand the movement and migration of people with no recourse to public funds as more than one-third of people experiencing homelessness in London are Central and Eastern European immigrants. Looking ahead, with inclusive data and housing-led strategies, the UK government is working to secure funding and space for post-pandemic accommodation to ensure that nobody returns to the streets.

Using data to design more impactful programs in Bengaluru, India

Dr. Surashree Shome discussed Bengaluru’s COVID-19 response as the pandemic had a large impact on homeless and migrant populations across India with over 27,000 temporary shelters opened.. In Bengaluru, at first the city’s 9 permanent shelters were utilized and then an additional one hundred temporary shelters were opened across the city to meet the increased demand. Dr. Shome and her colleagues at APPI launched a study from ten shelters — five permanent and five temporary, to better understand the demographics of the people utilizing the shelters. The objectives of the study were to help develop a more effective strategy to deliver support and to advance policy advocacy for addressing homelessness.

“Understanding the profile will help us design programs and also advocate policies for them because these are the people that are accessing shelters.”

Collecting disaggregated data by age and sex showed the need for additional shelters for women and the elderly. The study found that only 7 percent of the shelter residents were women, with many women afraid to enter shelters due to security concerns. With 82 percent of the residents above the age of 60 years old, the study showed the need for geriatric care services and exclusive spaces within shelters to protect the most vulnerable to COVID-19 infection. The data also revealed the large impact of the COVID-19 pandemic on migrant and shelter populations, about 80 percent of the shelter residents were working before the pandemic and 58 percent of the residents said they are unable to buy masks and sanitizer. Shelter residents also had difficulty accessing government benefits during the pandemic with only 62 percent having the required aadhar government ID-card. APPI and partners are using the study data from the government to create recommendations on more targeted and impactful programs.

Surveying cities to better understand COVID-19 responses

In surveying 22 cities on their homelessness sector interventions to COVID-19, Molly Seeley found that there was a wide spectrum of system responses.  Some cities reduced programs while restricting access and increasing criminalization, other cities added sanitation and protective protocols to normal services, and there were also cities that completely transitioned their systems to move the majority of rough sleepers into self-contained accommodation. For these housing-led responses, clear leadership was a common thread with many cities creating task forces between government, health, and homeless organizations. 

 “One of the really key pieces is that for systems who shifted to looking at root cause rather than mitigation, there was very clear leadership that was coordinated between city officials and homelessness experts.” 

Seeley’s research also showed that lack of resources prevented some cities from meaningful adaptations, but larger investments do not necessarily steer cities toward overhauling their system responses to homelessness.  Seeley’s research found that previous attitudes around homelessness shaped COVID-19 responses more than the availability of new resources/amount of funding. In cities that adopted COVID-19 housing-led responses, this had already been part of the city’s homeless response, or was being discussed prior to COVID-19.