Need Assessment Committee Meeting Minutes April 18 th, 2019


Marcy Thompson & Amanda Lugg, Co-Chairs
April 18 th, 2019, 10:00AM -12:00PM

LGBT Center, 208 West 13th Street, Room 301, New York, NY By Conference Call – 1-866-213-1863, Access Code 3587454#

Members Present: Amanda Lugg (co-chair), Marcy Thompson (co-chair) Jan Carl Park, Fay Barrett

(phone), Randall Bruce, Paul Carr, Billy Fields, Timothy Frasca, Guillermo Garcia-Goldwyn, Graham

Harriman, Jennifer Irwin, Ron Joyner, John Schoepp, Mytri Singh, Robert Steptoe (phone)

Members Absent: Maria Diaz, Micah Domingo, Carol Kunzel, Ruben Rios-Vergara, Saul Reyes, Janie Simmons, Maiko Yomogida

NYC DOHMH/PHS Staff Present: Nadine Alexander, Ashley Azor, Jose Colon-Berdecia, Julie Lehane, Kimbirly Mack, Kalani Thaler

Welcome/Introductions/Moment of Silence/Public Comment/ Review of the Meeting Packet/Review of the Minutes:

Ms. Thompson led introductions, including pronouns, and an icebreaker about spring. Mr. Park honored Humberto Cruz during the moment of silence.

Public Comment/New Business  

Mr. Garcia-Goldwyn raised an issue with the appointment of Amanda Lugg as co-chair of the committee since she had not previously served on this specific committee. The committee was not informed or apprised of the decision, but it is the responsibility of the governmental and non-governmental chair to appoint the co-chairs. A grievance can be brought to the Rules and Membership committee with regard to the process of selection and the outcome of that process. Mr. Frasca moved that this issue be referred to the Rules and Membership committee. 

CHAIN Presentation on PLWH with Disabilities

Dr. Messeri presented CHAIN data on the disabilities experienced by people in the study. Fort he US adult population in recent years, roughly 12% of adults experience a disability. Ms. Carmody programmer and research assistant presented the data. The presentation reviewed the following:

  • Definition of disabilities
  • Findings for CHAIN participants interviewed between 2015-2019 o Proportion of participants with one or more disabilities o Disability by race/ethnicity o Proportion of participants by disability status:
    • Engaged in care overall, and by race
    • Virally suppressed overall, and by race o Top five service categories serving participants with a disability
  • Trends in disability, 2015-2018, among CHAIN participants 50 or older

Validated questions are asked to determine if people have difficulties that can be classified as disabilities. Approximately half of the NYC sample report a disability. In Tri-County almost 60% of people have a disability – unsure as to why the number is higher. When looking at engagement in medical care, there does not seem to be an association between having a disability and non-engagement. Among participants, people self-report all the data collected by CHAIN, so viral loads may not be accurate. See slightly lower rates of viral suppression for people with disabilities.

For people with disabilities, common service categories are food and nutrition and medical case management. Not large differences in engagement in care for people with disabilities and the rest of the cohort. Cognitive difficulty presents for people at a much higher rate than the general population – and providers should be aware of these limitations.

Some of these questions don’t seem to get at whether or not people have disabilities, but because it is a general survey, it’s meant to give a broad sense of what is happening among people with HIV. Disabilities are much more prevalent than in the general population among PLWH.

Mr. Park is working to gather statistical information on people with disabilities throughout the country.

The data presented does not discern if the disability was experienced before or after becoming infected with HIV. Do PLWH require a different modality of treatment for disabilities?

Do people with disabilities perceive difficulty in accessing services? Are they as satisfied with the services they receive? Which service categories showed statistical significance? Interesting to narrow down the apparent difference in the trend?

Ryan White and CHAIN are similar but not the same. RW has intensive adherence support. People with HIV live with a broad range of conditions and disabilities that transcend just HIV infection – we should be asking why.

Ask if people experience barriers to care.

CHAIN does not ask about the timeline for disabilities or co-morbidities. But these are good questions.

Please expand the last two slides and give information on difficulty accessing services. 

Forum for PLWH with Disabilities

Currently scheduled for the 10th of May at the CUNY Graduate Center on 125th St in a wheelchair accessible space. Included in the packet is the invitation letter to disabilities agencies. 

Committee read through invitation letter to disability advocates. Recommended changes include: 

  • Spell out ADA
  • Targets disability advocates
  • Letter should be more of a marketing tool. Folks who are unfamiliar with the Council – requires a spicy letter.
  • Spanish version, French creole version
  • Put a flyer on the flip side.
  • Make clear what we want from people
  • Is a town hall the correct type of event?
  • Let people know we want to learn from people.

A lot of movement happening around access for people with disabilities around education and transportation – really need to focus on harnessing that area. 

There are laws governing accessibility. Is the focus on data collection appropriate? What data do we want to collect – what data should we be collecting?

Should have ASL translators there. Have to ensure that the meeting is accessible for everyone.  Issues around stigma, marketing, etc have been raised, but should we identify the disabilities and the appropriate advocacy orgs and do outreach specifically to them?

Outreach to SAGE, Griot circle, instead of just putting it out there. There are many organizations out there.

Maybe we should rethink our approach to this.

Mr. Goldwyn-Garcia offered to provide a list of resources for people with disabilities.

Ms. Lawrence proposed we move the forum to June.

Is a subcommittee needed to help facilitate the forum?

Draft of Disability Recommendations

Review of slides. 

Ms. Singh recommends placing Recommendation 6 into Recommendation 1 as they both refer to data collection. 

The issue with the recommendation is that it needs to be specific and site validated tools for assessing disabilities in the portfolio- or ask us to use validated tools. The info collected in the screening tools are used to plan what services that person needs. 

A lot of providers would not want such a tool in e-share – need to figure out what information should be captured where. 

How do you structure questions to identify “hidden” disabilities? Hearing loss, cognitive impairments and dyslexia are examples of hidden disabilities. 

We can find some different screening tools and see what the community feels would be most appropriate.

Who will see these recommendations? Patients or providers?

Should we sort recommendations by whom they target?

Checklists and trainings to facilitate appropriate navigation of local, state and federal human rights laws.

Finding funding streams for accessibility is going to take a lot of work.

Include more specific language in the patients bill of rights. 

Reasonable accommodations are frequently denied based on cost.

Strong debate about whether a forum on disabilities is needed. The committee voted to think about it.

New Business