By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate
For years, advocates, clients, case managers, and medical providers have all bemoaned the requirement for clients of the Ryan White HIV/AIDS Program (RWHAP), particularly for the State AIDS Drug Assistance Programs (ADAP), to “re-certify” their eligibility for the program every six months. The process was particularly grueling for clients and providers with difficult to manage fax systems, mail, and document gathering to prove income and residency. The initial qualification process, after all, requires a confirmed HIV diagnosis, documentation of living at or below 400% of the federal poverty level (in general – some states allow for up to 500% FPL), and proof of state residence. It is thorough, as it is cumbersome. The ADAP Advocacy Association has urged the Health Resources & Services Administration (HRSA) to improve the client eligibility recertification process.
Generally speaking, clients also have to prove they’ve sought any other assistance available to them, such as Medicaid or Supplemental Nutrition Assistance Programs, as Ryan White is required to be a payer of last resort. In a program document entitled, “Policy Clarification Notice (PCN) 13-02: Clarifications on Ryan White Program Client Eligibility Determinations and Recertification Requirements”, first implemented in 2013 and last updated in 2019, HRSA issued interpretive guidance. It included a particular timeframe for recertification of client eligibility, but no such timeframe is directed or defined in the statutory language of the program. Earlier this year, we published a blog detailing the ways in which HRSA could and should approach modernizing the recertification process in order to ensure recertification was not a barrier to care for low-income people living with HIV/AIDS.
On October 19th, after years of grassroots efforts to update the guidance, HRSA issued a long-awaited update to this policy, posted as “Policy Clarification Notice (PCN) 21-02: Determining Client Eligibility & Payor of Last Resort in the Ryan White HIV/AIDS Program”, accompanied by a “Dear Colleague” letter detailing some of the changes in the updated policy notice. My phone dinged when this posted…repeatedly. Advocates across the country were celebrating the win in what has long been viewed as an arbitrary and unnecessary barrier to care. Among the interpretive changes around recertification the PCN also reaffirms eligibility for Ryan White programs is not determined based on citizenship status, but residency. Some advocates cheered the acknowledgment and others wish to remain a bit quieter as certain political forces would fail to understand the public health value in ensuring a program meant curb the spread of an infectious disease is actually effective.
The details provided in the PCN about what should replace the six-month recertification process are limited and that may be a concern for advocates as states evaluate what they may do with greater flexibility to ensure eligibility. HRSA notes recipients (most often states, affected urban areas, and community based organizations) and subrecipients should make every effort possible to reduce the administrative burden on clients and program staff, suggesting automated cross-checks may be available for determining income eligibility. The suggestion is strikingly similar to how many Medicaid programs are set up to cross-check state and federal tax reporting to determine income eligibility without requiring additional effort from clients in many situations. Non-reported income or support will, however, need to be documented with case managers according a recipient’s policies and procedures. HRSA cautions the currently available “self-attestation of no change” policy should not be allowed to go indefinitely. But…one could envision longer term, fix-income ADAP clients not necessarily needing to engage with any particular system of income or residency verification, especially as our population continues to age. HRSA specifically encourages recipients to seek ways to reduce the reporting burden for clients and establish systems of determining eligibility renewal that would verify a person’s eligibility “without requesting additional information from the individual.”
The PCN contains another statement of particular note: “RWHAP recipients and subrecipients should not disenroll clients until a formal confirmation has been made that the client is no longer eligible.” This directive, on its face, directly addresses an unfortunately common happenstance when clients faced situational barriers to gathering documentation or arranging logistics for recertification. It is not uncommon for case managers to face challenges when engaging particularly vulnerable clients, especially those facing houselessness. Just because one cannot get ahold of a client for several weeks doesn’t mean they should be booted off a system of support – rather it means that system needs to try harder to meet that client’s needs.
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| Photo Source: CU Today |
In the space between HRSA’s words and the excitement advocates and clients feel, advocates need to be prepared to fight for and defend changes that reduce these administrative burdens on clients. Recipients are often loathe to make big changes or to make many changes with any kind of speed. The PCN was effective immediately upon publication. For advocates in states and localities are on a less than friendly basis with their advising community members, any lack of definition could easily be abused to impose stricter requirements on clients. Nothing in the PCN specifies any particular minimum standard from HRSA, nor is there an outlined process for community members and advocates to engage HRSA should they believe a recipient’s design does not best benefit their community. In this, HRSA should consider these documents may be directed at recipients but recipients and subrecipients are not the only members of the public engaging. Many advocates are intimately familiar with the rules because they’ve experienced the negative impacts of lax oversight and recipients with…other priorities.
Recipients and advocates alike should be prepared to quickly engage in a process of negotiating change that best suits their communities. This may look like a non-uniform program. I heard the concern of one ADAP that clients who need more personalized help may “fall out of care" due to a lack of standard engagement schedule. I suggested to one ADAP that’s unsure of change, starting with a more generous approach to recertification and issuing small pilot studies for particular client-types (i.e., those who need more “hand-holding” to manage applications for assistance but are fine in every other of care) to design a recertification process that fits the needs of their particular communities. The suggestion of a universal assistance portal in states makes a great deal of sense in a modern world. And, as we’ve seen with Covid-19 vaccine roll-outs, an online-only model doesn’t work for everyone. Benefits navigators will still be needed.
Whatever the approach to considering this monumental and potentially beneficial change, recipients and sub-recipients should actively engage community members more now than ever. Regardless of the obstacles that may arise moving forward, I’d gently remind administrators and my colleagues, “We don’t have problem clients, we clients with problems and it’s our job to help them” (quote attributed to Joey Wynn, former ADAP Advocacy Association board member providing public comment at a Florida Comprehensive Planning Network meeting).
Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.
