Need Assessment Committee Meeting Minutes January 17th, 2019

Meeting of the NEEDS ASSESSMENT COMMITTEE
Marcy Thompson & Amanda Lugg, Co-Chairs
January 17th, 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#
MINUTES

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

Randall Bruce, Paul Carr, Maria Diaz, Micah Domingo (phone), Billy Fields, Guillermo Garcia-Goldwyn

(phone), Graham Harriman, Jennifer Irwin, Carol Kunzel (phone), Saul Reyes, John Schoepp, Mytri Singh, Robert Steptoe, Maiko Yomogida

Members Absent: Marcy Thompson (co-chair), Timothy Frasca, Ron Joyner, Ruben Rios-Vergara, Janie Simmons

NYC DOHMH/PHS Staff Present: Nadine Alexander, Ashley Azor, Jose Colon-Berdecia, Rong Gao, Julie Lehane, Darryl Wong

Materials Distributed: 

• Meeting Agenda
• December 2018 Meeting Minutes
• Presentation: Disability in Ryan White Part A
• Presentation: Affirming Health Care for HIV+ People w/ Disabilities
• Tri County Oral Health Service Directive
• Tri County Oral Health Standard of Care
• HIV Surveillance Annual Report, 2017
• Calendar

Co-Chair Amanda Lugg opened the meeting with introductions and a moment of silence. Ms. Lawrence reviewed the meeting packet and the minutes were accepted with one change. The date for a town hall was broached.   

• Presented by Jan Carl Park
  • As people living with HIV age, we will see higher and higher numbers of this population impacted by disabilities. 
  • Strong medications, particularly those associated with the beginning of the epidemic can result in disabilities

• Challenges for people with disabilities remain the same regardless of what service they need.
  • Necessary to train providers
• Presentation is in 3 pieces: mobility, cognitive and hearing impairments
  • Symbols were adopted by the city council in legislation in 2015 – symbols facilitate accessibility of public meetings – applies when publicly funded, city/state/federally funded
  • We do not collect “good” data on people with disabilities – we should know what the
  • numbers are in the RWPA population
• Is hearing loss HIV related?
• Very few studies on this topic – and very few PLWH are donating their eyes to improve these studies
  • HIV does seem to impact hearing, and the more severe the infection the more it impacts hearing loss 
  • Most public buildings do not have hearing loops
  • Hearing loops are like curb cuts for the ears
  • We have live captioned or open captioned our Planning Council meetings which has gotten good feedback
  • 34,000,000 living with HIV worldwide have ocular challenges
  • Glaucoma and cataracts and diabetic complications seem to be the most common issues among PLWH when they age
• Access for people with disabilities improves access for everyone
  • This was just a general review of what life is like for people with disabilities. Responses:
  • Surprised to hear that hearing loss is hereditary
  • Do the studies distinguish between disease progression and aging? Not always a  definitive answer.

Presentation by Nadine Alexander on data collected on Ryan White clients. Started collecting disability data in January of 2014 for Care Coordination. In April 2014 the rest of the service categories began collecting this information. 

In RW, a disability is defined as responding ‘yes’ to any of the following questions:

• Are you deaf or do you have serious difficulty hearing? (Hearing)
  • Are you blind or do you have serious difficulty seeing, even when wearing glasses (or contact lenses)? (Sight)
  • Because of a physical, mental, or emotional condition, do you have a serious difficulty concentrating, remembering, or making decisions? (Cognition)
  • Do you have serious difficulty walking or climbing stairs? (Mobility)
  • Do you have difficulty dressing or bathing? (Self-care)
  • Because of a physical, mental, or emotional condition, do you have serious difficulty doing errands alone such as visiting a doctor’s office or shopping? (Errands)

The blue bar represents the racial breakdown of clients enrolled and served in 2017, the green bar represents the proportion of clients from each race/ethnicity, with one or more disabilities. Among newly diagnosed clients, Overall, 217 (2%) of clients identified as Asian/Pacific Islanders and 39 (0.3)% Native Americans. Race/ethnicity was unknown for 30 (0.2%) of clients. 21% of Asian/Pacific Islanders, and 46% of Native Americans had one or more disabilities Engaged client is measured as having at least one HIV appointment after the initial 8 days post diagnosis. Overall Black: 97% Hispanic: 98% White: 98% Other: 98% API: 213/217 (98%) Native American: 37/39 (95%) Other: 29/30 (97%) With a disability Other: 78/80 (98%) API: 45/46 (98%)Native American: 18/18 (100%) Other: 15/16 (94%)

The blue bar represents the racial breakdown of clients enrolled and served in 2017, the green bar represents the proportion of clients from each race/ethnicity, with one or more disabilities. Among newly diagnosed clients,Overall, 217 (2%) of clients identified as Asian/Pacific Islanders and 39 (0.3)% Native Americans.

Race/ethnicity was unknown for 30 (0.2%) of clients.

21% of Asian/Pacific Islanders, and 46% of Native Americans had one or more disabilities

Engaged client is measured as having at least one HIV appointment after the initial 8 days post diagnosis.  Overall Black:  97% Hispanic:  98% White: 98% Other: 98% API: 213/217 (98%) Native American: 37/39 (95%) Other: 29/30 (97%) With a disability Other: 78/80 (98%) API: 45/46 (98%)Native American: 18/18 (100%) Other: 15/16 (94%)

Difference in the proportion of clients with and without a disability in viral suppression is not statistically significant Other: API: 34/45 (76%) Native American: 12/18 (67%) Other/unknown: 9/14 (64%) 

Overall: Black: 5,224/6,847 (76%) Hispanic:  4,151/5,136 (81%) White: 934/1,066 (88%) Other: 230/277

(83%)  API: 184/212 (87%) Native American: 28/37 (76%) Other/unknown: 18/28 (64%)

Field Services Unit (FSU) 552 (9%) Mental Health Services (MHV) 360 (6%) Legal Services (LSN) 349 (6%) Non-Medical Case Management for 330 (5%) Incarcerated or Release Individuals (NMI) Harm Reduction Services (HRM) 305 (5%)

*The number reflects the total number of clients with at least one disability in the service category, and the percentage reflects the proportion all clients with a disability served by that service category

In 2017, 6,156 clients reporting having one or more disabilities, of these 29% received food and nutrition services in 2017… 

Note: Clients are not mutually exclusive and can receive services from more than one service category

All Clients         Among Clients with at least one disability

                         >=50 >=50

FNS          69%            76% 

MCM       47%            60% 

FSU          56%            46% 

MHV        53%            60% 

LSN          52%            66% 

NMI          41%            41% 

HRM         56%            65%

*Percentage is relatively low because the majority of programs started reporting on disabilities in April 2014

Percentages were lower for clients under 50: 2014-14%, 2015-20%, 2015-23%, 2017-22%

Ms. Simon updated the committee on what is happening across the state to improve care for people with disabilities. Over the past two years plus, the state has funded programs specific for the deaf and hard of hearing community – particularly in Rochester – large community there.

One has renovated their waiting area and examination rooms to ensure access for people with wheelchairs. Trained staff are learning HIV specific sign language. Sexual health for people with disabilities is being addresses – many people with disabilities say their sexual health is overlooked. A PSA has been developed to increase awareness. Many materials are being developed. Working on doing a better job gathering data on these populations. Working on developing a directory to improve specialized access to care for people with disabilities. 

Mr. Park suggested the committee should tour a disability responsive clinic and work with disability advocates. Ms. Azor requested more information on the top 7 service categories that serve people with disabilities as to what disabilities are most represented. Ms. Alexander will get us this information. Mr. Reyes will no longer be able to participate in the committee since he has gone back to school. He noted that there needs to be more education to inform what is necessary- people cannot be prepared to offer services that they are ignorant about. There needs to be greater awareness as to what a disability is.

The term – ‘you have to live it to understand it’ should not have to apply. 

Mr. Park explained that a loop hearing system is a cable that goes around a space and allows people with tcoil hearing aids to hear much clearer. Mr. Park will present on assistive technologies at a later date.

Number of examples that can help people understand what it means to have visual challenges.

Mr. Fields wanted to emphasize how difficult it is for people in wheelchair – how you can get so close and not be able to take the last step. 

Mr. Carr suggested we look at how cash assistance may be of help to people with disabilities. Ms. Simon noted that there is a document coming out of the state around appropriate language, which she will share with the committee. 

Ms. Alexander and Mr. Harriman noted that we do not have guidance around how to ask questions on disabilities.  Important to indicate client’s needs – but may often miss non visible disabilities. Often people with disabilities do not disclose additional needs. People frequently do not know they have a right to accommodation and that they can ask for them.

Oral Health subcommittee assembled.