Speak Up for Sept: How Has Home Care Affected Your Life, Family, Community?

We are united in our belief that the time is past due for AIDS groups, gay groups and the healthcare establishment to focus on making necessary changes so the current system of care can meet the special needs of HIV-positive seniors, and treat them whenever possible in their home environments.

How bitterly ironic it would be if the first generation of HIV-positive seniors, a generation that, through unprecedented community effort, has managed to survive the plague, should in their last and most vulnerable years fall victim to a system that is utterly unprepared to care for them.

-- Jim Eigo, ACT UP New York

The AIDS community was born -- in part -- when we took care of one another when society refused us the care we needed. And now, our voices are needed to fix a broken system that mistreats care providers, neglects the needs of LGBTQ people and people with HIV in need of care, and that prioritizes the voices of the lobbyists of big business providers over the needs of families and the mostly female and immigrant workers who provide care.

This September, HIV PJA is partnering with Caring Across Generations campaign for the HIV/AIDS and Caring Mobilization. As part of the mobilization, we are building a rich set of stories to show the diverse and powerful ways we have cared for each other, and to show what we need from our nation right now and in the years ahead.

  • Have you provided home care for a family member, and/or for a person living with HIV?
  • Are you someone who is both living with HIV and working in home-based services?
  • Are you a person living with HIV and/or LGBTQ person who has thoughts about the quality of personal care you may need as you become an elder in our communities?
  • Has your family faced challenges in getting quality care for your loved one with a disability, chronic illness or elder care needs?
  • Do you have another story that speaks to the issues at the intersection of care needs, HIV/AIDS and/or LGBTQ lives?

Contact Suzan Walters at HIV PJA to lend your voice to this important campaign.

We welcome all stories, including those from:

  • People who care for, or have cared for, a partner, spouse, child or other family member with HIV
  • Rural voices on home care experience and needs
  • People living with HIV who work in home care
  • Providers of model programs in the AIDS community
  • Queer and transgender people who have provided and/or utilized home care
  • Health care activists facing challenges and/or gaining insights in personal or professional roles regarding home care

Your stories -- which can remain anonymous -- will help us show the economic impact of home care on workers, our families and communities ... shed light on the specific care needs of LGBTQ people and people living with HIV ... and spell out what we have experienced and what we need in our interactions with health care systems and the caregiving industry. Click here to get involved.

We welcome you to write your own experiences and thoughts, capture them on video, or contact us to set up a phone or video interview. Please contact Suzan Walters at SWalters@aidschicago.org as soon as possible for more information, or to set up an interview.