PACHA call meltdown

Posted in hiv by SCHA-LA on July 2, 2010

HIV PJA LiveBlogs PACHA, Persists When Fed Call Goes Awry!

PACHA Says Sorry,
Announces Last Minute Public Comment Call for FRIDAY

Thanks to everyone who joined us yesterday for the first HIV PJA LiveBlog.

We started the conversation as people with HIV and other activists around the country while we waited on hold for the teleconference meeting of the Presidential Advisory Committee on HIV/AIDS (PACHA) , the top advisory body to President Obama on the epidemic. Its membership includes people living with HIV, and it also includes long-time allies of CHAMP and members of the HIV Prevention Justice Alliance.

The main item of business was passing a resolution that addressed the crisis in access to AIDS drugs, referencing the need for more (and more than one year) funding for the AIDS Drug Assistance Program (ADAP), and the need to accelerate expanded access to Medicaid coverage for people with HIV through the Early Treatment for HIV Act (ETHA).

But halfway through the call, things went haywire when they open up the phone lines, unmuting everyone and then cutting everyone off abruptly and terminating the call! It was a disappointment to those who were scheduled to give public comment (only eight were allowed to begin with, but then only one got a chance to do it) and everyone else who wanted to chime in but was not allowed.

Seems like our homegrown first time liveblog ran more smoothly than the actual PACHA meeting, even though our servers crashed just 15 minutes before we went live!

People on the call were left confused and disappointed, and even angry that it was unclear if or how they could give comment. It didn’t help that the call itself started about 15 minutes into the one hour session…

Within minutes of the blog wrap-up, the HIV PJA got calls from HHS and the Office of National AIDS Policy, apologizing and asking how they could make this right.
We asked them for an explaination in writing of what happened; for a reconvening of the meeting as soon as possible; and for all future PACHA meetings to be announced not only in the goverment-ese Federal Register but have additional plain-language announcements of what will occur, how the public can be involved, and all ways to get your input to PACHA.

We noted that PACHA Chair Helene Gayle never announced during the call that the public could submit comments to Melvin Joppy or otherwise explained the format for the call, which gathered the PACHA members on the phone but was also open to the rest of us as well, and demanded that this be rectified in future meetings.

Then today, PACHA posted on their website an apology and notice of a follow-up call two days from now – the Friday afternoon before a holiday weekend! – but neglected to notify us, once again ignoring a vital channel of public information. The apology and details on the call follows. We will also let you know if the call is pushed back to allow more time for people to put it in their calendars….

But first, a few follow up points:

1) Here’s a recording of the PACHA Call itself.

2) The actual PACHA members lauded our blog, and are not responsible for the meeting’s faults:

If you go to the liveblog transcript on our site, you’ll see that multiple PACHA members joined us. We want to stress that they did not set up the meeting nor are they responsible for communications or technical difficulties. Thanks for participating, and for being open to public comment to PACHA, and for participating in public engagement on PACHA.

3) LiveBloggers prepare to use PACHA resolution for mobilization for US Treatment Access!:

Even as the resolution on drug access was passing, our LiveBloggers were springing into action. They started making plans to collect endorsements for the PACHA resolution as a mobilization tool – look for that in the coming days and get ready to accelerate action for universal AIDS drug access!

4) Public access to government processes affecting our lives is a human right and vital for HIV Prevention Justice.

Everyone has tech problems. Don’t we know it…

But we need to see a clear and sustained committment to openness, transparancy and public involvement from the leadership of PACHA. Holding a follow-up call on little notice, in the waning hours before a holiday weekend, is not the answer. Clear and timely public engagement that is consistent and truly accessible to the broad range of people living with HIV and their allies is necessary. This engagement includes not just listening but actually responding, working with the public to move forward on HIV prevention justice and other key issues in the domestic epidemic. As we prepare for the release of the National HIV/AIDS Strategy (NHAS), we demand a visible and measurable commitment to true public engagement as the NHAS moves forward.

Here is the PACHA apology and announcement:

Conference Call July 29th/Next Public Comment Conference Call July 2, 2010


We deeply regret the technical meltdown that was experienced in the PACHA conference call yesterday, Tuesday, June 29, 2010. It was a very unfortunate and frustrating situation for everyone involved. Because the call was scheduled for only one hour and was devoted to addressing one agenda, we set aside 8 public comment slots. The 8 individuals who were slated to speak were the first to respond to the Federal Register notice. As many of you know or heard, Carl Schmid from the AIDS Institute was the only one of the 8 that had the chance to speak.

Clearly from the conversations that took place following the abruptly ended conference call and the many postings on blogs and discussions across chat lines it is apparent that many people would like to have the opportunity to give oral remarks for the record.

We have set up a conference call for Friday, July 2, 2010 from 2 PM until 3:30 PM EST. The conference call lines will be open for one and a half hours to permit anyone who wishes to offer public comments to do so at that time. Each presenter will be limited to 2 minutes to place their statement into record.

Call-in = 888-566-1019
Passcode = 5709402

To send written comments please email Melvin Joppy at with your name, affiliation, contact information and comments.

Most importantly, PACHA did unanimously pass the ADAP Resolution and we it is being sent through formal channels to Secretary Sebelius. To view the Resolution go here:

The transcript of the call will go on the PACHA early next week.

Please stay tuned to and for news, blogs, and upcoming meeting announcements.

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Governor’s Proposed HIV Budget

Posted in CA Budget, hiv by SCHA-LA on June 22, 2010

Brief-State Budget Cuts #9 FY10-11 May Revise-061010-final to read the whole 3-page brief.

Highlights (or, rather, lowlights) include:

  • The budget includes the Governor’s January proposal to eliminate all ADAP support from county jails.
  • There is a proposed $32.7 million reduction to ADAP.
  • Eliminate full MediCal coverage for immigrants who have lawfully resided in the US less than five years.
  • Eliminate domestic and related services for IHSS recipients who have “less severe” impairments
  • Reduce the monthly SSI grant for an individual
  • Eliminate Cash Assistance Program for Immigrants (CAPI) and the California Food Assistance Program (CFAP)
  • The complete elimination of CalWORKs by October 1, 2010.

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Q and A With Dr. Roland

Posted in CA Budget, hiv by SCHA-LA on May 13, 2010

Questions to Dr Roland:

5.6million allocation from HRSA. What is the breakdown again?

ADAP $4.7m

MAI $207k

Base $691.6k

“diversion communities” 9k

Are there any attempts to amend bill that would allow electronic reporting from other jurisdictions?

Not aware of any being prepared by author. That limitation is recognized. Very difficult for me to talk abt legislation when it is active.

Re CA care & prevention plans – what’s up?

CPG/OA Jointly developing integrated care & prevention plan. It’s really impossible to do good planning or programming with separate plans, but in terms of planning we need to do, we need to have a joint plan. Foremost charge of cpg.

Room for community input- but no details from michelle about what that means.

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update from State Office of AIDS

Posted in CA Budget, hiv by SCHA-LA on May 13, 2010

Michelle Roland’s update (State Office of AIDS)
May Revise:
Might come out at 11 instead of 1. As soon as she knows she’ll send out notifications. There is a lt more likely to be in the budget which will impact PWAs than just SOA programs.
Program Allocations:
Re: increased HRSA Part B award: we got $5.6mill. very specific abt alloc $4.7 to ADAP $307k to MAI and … (didn’t get it – sorry.)
CARE funding has been a distressing situation for us. Last year we sent out 2 sets of allocation tables. 1st made initial decisions about how to handle loss of general funds, but then got an increase (1 time supplement) and we don’t have that at this point, so we’re back to that same pot + a little bit of addl $ in base award.
There is 89% of resources compared to last year.
LA County minus LB had reduction to 89.2% of the current FY allocation.
Continuing to work with all allocation formulas as fast as possible to move to a straight formula… many subjective issues which come up with changing …
Hard to have less $ on top of less $
Main diff with MAI is that last year there were 2 counties which would have rcvd MAI but they didn’t b/c of not getting previous bridge funding and there might not be capacity to do reporting, but this year they weill get it. 19 counties instead of 17. The amt is bad. Current year – for entire state is $875k. next year $1mill for entire state. Tyring to figure out a balance of giving jurisdictions a reasonable, meaningful amount and trying to stretch to as many jurisdictions as possible.
This year we anticipate receiving $1m less from general funds. Good news is that when we were faced with this last year, with all the ehars and names-based changes, we had to terminate any contracts with any academic partners who were helping us with research. All OA staff entirely funded with CDC research funds. This year, though, we have to pass the reduction to the local jurisdictions. Used a 2-step capping strategy… hold-harmless factors…
Everyone is doing a great job getting data into our surveillance systems associated with ehars transition. We are still not a names-based state yet. Increased RW award shows this.
AB2541 re: electronic lab reporting issue. The state system is under development & getting ready to be piloted. We need to ensure that hiv will be part of this.
Some sort of matching system between office of corrections & office of aids. Able to leverage this to understand better what is happening with hiv+ inmates. Questions about reporting from those institutions.
Successfully completed ehars migration. Not been able to implement full functionality due to state issues.

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summary of motion

Posted in hiv by SCHA-LA on May 13, 2010

revised motion:

“Move that up to $300k of funding be utilized by OAPP at it’s discretion to provide stable housing for HIV+ persons & their families who would otherwise lose their current housing due to their inability to qualify for other credible programs.”


“want to make sure that the neediest families get it first. Want to make sure that the money is used for housing and that it doesn’t get used somewhere else.”

“the word undocumented was taken out on purpose. We were told that we legally shouldn’t say that.”

“$1,329 per person is what it comes out to. Is this enough money to really help? Is OAPP the agency which can really make it happen with that little amount of money. I’ in support of making this happen. Also, I’m gonna get a lot of questions about where this money is coming from. I don’t see the city stepping in in a proactive way. I understand the pressure we can apply, but… they might not be proactive in this process. It’s a lot of questions.”

“I applaud OAPP for this. This motion is fraught with peril frankly. these folks are not gonna be kept in their current housing with this money. They are going to have to move out. If it’s stopgap and instant – is it THIS instant? as much as this is an issue of justice, I think this motion is problematic on a lot of issues and I move to postpone. And I will come back if we need to schedule an emergency meeting I will be there.”

“There was a second to the motion to postpone. This will require a majority vote. YES means consider at a future date. NO means vote today.” result:  MOTION NOT CARRIED.

Back to the motion at the top of this post:

“purely personal. This IS something we have to do today. We’re talking about people… we’re not talking about helping them AFTER they lost their housing. To engage them into case after that – the cost will be huge.”

“I want to help these people but I don’t think this is the way to do it. OAPP can do it with Net County Cost (NCC). I believe they can and will do so. It’s inappropriate to emotionally pull this money from we don’t know where”

people are talking too fast for me to accurately transcribe, so this is rough…

“I’m going to oppose this motion [because] it’s a very emotional issue – we all want a solution. This is a potentially illegal use of Ryan White dollars. This potentially highlights our ability to use RW  for undocumented [and what the fallout of that would be] Politically it creates a release valve and therefore doesn’t force the question on the original issue. I don’t like that outcome because it causes people to lose their housing, but it must be done to find a permanent solution.

There are 5 households who are being evicted in May, but more in June, July & August. Over the next 12 months there are 124 vulnerable households who could be removed involuntarily from their homes.

I would not say that this pot of money is stepping in to address that. I would say that this pot of money is there if it is needed.

We want to assist people in the Shelter Plus Care (S+C) program. Terry Goddard mentioned other programs which could be affected. We are only working on S+C issue. That’s all we’re talking about in this motion.

I am concerned that I don’t think that anyone here wants to vote to take away housing from someone. I can say that speaking from experience (referring to nutrition support drama last year). Caution us to pay attention to how we frame/phrase what we are doing.

It is implied that there may be other resources. If that is the case, we would like OAPP to spend other resources prior to using these funds – can we say that in the motion? We would like a demonstration that other resources have been exhausted?

We can say that this is funding of last resort. You would have to amend the motion.

Parliamentarian says that there might be “some implication” about who/what “last resort” means.

Motion to amend the motion seconded.

We have no authority to make a motion of net county cost.

co-chairs do not object to addition of this language.

Motion amended to include that language about ‘last resort’

If we don’t address this now it will cost more to the county in the end.

Regardless of how we vote today, this is a major public health issue. This is a canary in the coalmine. My suggestion is that we try to prioritize families with children first.

Sharon White (public comment): as a rep for SPA 6 (south LA) I heard some things about the MAI (Minority AIDS Initiative). I just want to know: how are there funds that are left over?

[public comment is not answered but it can be added to the agenda for P&P so it can be discussed]

this vote is outside of the conversation about actual allocations continuing in P&P subcommittee meetings.


“Move that up to $300k of Ryan White funding be utilized by OAPP at it’s discretion to provide stable housing for HIV+ persons & their families who would otherwise lose their current housing due to their inability to qualify for other credible programs. Ryan White funding should only be used if other funding sources can’t be found or utilized.”

summary of the pre-vote comments: don’t pick on people who don’t vote the way you want them too. Everyone around the table is great.

watt – y

washington-hendricks – y

Villa –

sotomayor – y

simon – y

rivera – y

peterson – y

goddard – y

o’malley – y

o’brien – n

lopez – y

long – abs

liso – y

kochems – n

johnson – n

james – y

goodman – y

guigni – y

engeran-cordova – n

deaugustine – abs

ceja – y

butler – abs

ballesteros – y

avina – y

daly – y

braswell – y

yes = 17

no = 4

abstain – 4


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Center for AIDS Prevention down – consent decree

Posted in hiv by SCHA-LA on March 11, 2010


There have been a LOT of articles about the Center for AIDS Prevention (see below), the fake AIDS charity which was soliciting funds from all over the country. A Consent Decree has been signed in Illinois, and their website is down. I think this means that they’re out of business.

I checked with Chris Weaver, Expert-at-Large, and he tells me:

On your second question, in short, No. It means only that they won’t be able to work in Illinois or qualify to do business elsewhere as an Illinois-based company. Because this is a matter of state law, not federal law, nothing prevents Neely and his associates from incorporating a new business – perhaps with the same name – in California or any other state. However, California may decide not to grant Neely’s applications on the basis of the Illinois charge, which Jerry Brown’s office is aware of. Brown’s spokesman could not say whether they would mirror the Illinois action.

So, for now, we’re happy. I sent an email to Lomax Burnett (, the fellow who some local activists paid a visit to in Beverly Hills and the spokesperson for CAP, and it bounced back with the following message:

Delivery has failed to these recipients or distribution lists:
The recipient’s e-mail address is invalid. Microsoft Exchange will not try to redeliver this message for you. Please check the recipient’s e-mail address and try resending this message, or provide the following diagnostic text to your system administrator.

The following organization rejected your message:


ProPublica articles on CAP

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HIV Commission Brief #1 on ADAP $$

Posted in hiv by SCHA-LA on December 8, 2009

Brief-ADAP #1-120109-w Comm Ltr

Please click on the link above to read a 12-page brief in anticipation of ADAP (the AIDS Drug Assistance Program) being impacted by the California state budget.

There have already been demonstrations in San Francisco.

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brainstorming session

Posted in hiv by SCHA-LA on November 12, 2009

What are the issues/challenges?

  • Is there a notion that planning isn’t important or that it’s going to go away?
    • Craig: When there is a discussion about streamlining, especially when economic hardship is @ the root of that conversation, Craig’s comment addressed that we don’t streamline it so much that  it’s not substantive any longer. The planning process doesn’t yield anything significant and makes the planning process worthless
  • Re Julie’s presentation on Universal Healthcare / Healthcare Reform (HCR) – there is the medical care coordination component which we are working on currently. That will be able to continue regardless of what happens @ the federal level. What about ADAP and immediate action that needs to take place? Don’t  want to be put on a waiting list
    • at the core is our ability to provide medication
  • Mickie: at the last mtg we tabled until today an item which isn’t on the agenda: a stmt was made by Mario that it is too great a burden to follow all the directives that the COH gives and that all the Standards of Care might not be implemented. Subtext: comprehensive care plan. That was a huge issue. The room exploded but it was put off b/c it was said @ the end of the meeting and it appears to have vanished.
  • Whitney: We strive for constructive tension but we have arrived at destructive tension. Can we call out some of the respective trust issues?
  • Carrie: when I look @ the list of partners that is on the agenda – is this an exhaustive list or are we missing potential partners we could leverage? and
  • Prison parolees – what does that mean in terms of the state of health for LAC?
  • Carol:  partnerships & collaborations. 2 yrs ago, CDC was here to discuss collaborations. This was before the current economic problems. This has not only affected HIV, but also STD, TB, HCV … when do we start to collaborate? We’re reaching out to the same populations.
  • Sharon: post-incarcerated & ADAP. Underserved pops are usually the most incarcerated. To not ensure that they don’t have rx when they go back out into the population is tantamount to criminal. Also
  • Why so long for the HOPWA wait? Criminal background checks and tendency to underserve these communities.
  • Robert: how do we educate & empower the people using out services in addition to people who could potentially be clients or who may never seroconvert
  • Ted: remember walking into an ASO and applying for ADAP 23 years ago. She said that “it’s over. You have to either die or wait for someone else to go to get on the list”. She produced a pamphlet and said “you have to call the governor and you have to get involved”. The people who laid down the groundwork must be turning over in their grave. We think our animals much better than we treat ourselves right now. We can not go on like this. Every day I am … getting someone to listen because we need to take our government back. It is unacceptable that pharma aren’t present for this. They’re sitting pretty. they have tax shelters in the cayman islands. They need to be here to hear these stories time and time again. They need to step up in times of crisis and relieve some of their profits so we can have life.
  • 5% of pop with syphilis are responsible for 50% of new infections.
  • Define “network” and “collaboration” – what are we walking about? What do we mean by that?
  • Medicare reductions
  • How do we keep quality high with reduced resources and less staff? How do we keep a solid infrastructure?
  • Bone-weary of the rancor between COH and OAP and there is plenty of blame on both sides. Stop the needless posturing, wheel-spinning and accusations.
  • Communities are made up of people, not agencies and clients.
  • Alternative economies build community, enable us to care for and about other people in the community because the health of the entire community is keeping everything going. Also, keep people (“clients”) from skills atrophy as everything is being done by a provider
  • Look at countries that have very little but do great work – examples.
  • Carrie:  I don’t think we’re walking away with very much.  … my issue is that our focus – should it be on funding on services on engagement in care. If it is those 3 lenses, then when are we going to have the opportunity to begin to address this and when are we going to think about the issue of civic engagement. We had an entire state that simply sat by and watched budgets be cut and funding be cut and there was no outcry.  Can we start that genuine discussion now or do we wait until December.


  1. 1. Is planning going to go away?
  2. 2. What do we do about ADAP?
  3. 3. Is burden of directives too great?
  4. 4. Are Standards of Care being implemented?
  5. 5. Concrete (small) steps toward building confidence and trust
  6. 6. Are we missing potential partners?
  7. 7. Collaborations. When do we start?
  8. 8. Streamlining HOPWA and criminal background checks
  9. 9. Educating and empowering people about how to access services, and which services – what they have available outside of public sphere
  10. 10. keep clients as independent as possible for as long as possible
  11. 11. take government back
  12. 12. pharmaceutical companies need to give back.
  13. Better understanding of planning for services that OAPP implements
  14. Can we plan over a longer period of time than a single year? Look with more long-term
  15. STD and HIV must work together.
  16. Planning that can be realistically implemented
  17. Medicare reductions
  18. Undocumented people paying for medical insurance
  19. Moving people to medi-cal
  20. 20. How do we keep quality high with reduced resources and less staff?
  21. Improvement in tone of dialogue.
  22. Collaboration is not about getting money from other pies
  23. Collaboration is about people
  24. Alternative economies (time banks, bartering etc)
  25. Leveraging policy and political resources
  26. Relationship is critical
  27. Civic engagement (people outside of this room)


ESPECIALLY issues between OAPP and the HIV Commission. Can we discuss these through this lens?


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HIV-impacted LA: 2009 (what the Commission did this year)

Posted in hiv by SCHA-LA on November 12, 2009

Carla Bailey and Tony Braswell Co-Chairs presentation on Accomplishments of the LAC Commission on HIV:

“…. But we stand” [Carla Bailey]

Joint Public Policy

  • worked with uthor to revise county support for AB 1045
  • participated in planning of National HI Strategy, genera ed policy briefs
  • Developed Commission’s 2010 policy agenda
  • maintained policy docket, monitoring 30+ pieces of legislation
  • collaboration to promote/support re-authorization of Ryan White
  • hosted/led statewide ADAP Summit
  • building momentum for HIV in adult film industry
  • opposition to the state budget (organized rallies in LA and Sacramento)
  • helped prevent cuts to ADAP and surveillance, maintain separate allocation to other areas of the state.

Priorities & Planning

  • spent 10 months in priority and allocation setting
  • created first Service Utilization and Needs Assessment Report
  • established new methodology and specific SPA 1 allocations & thresholds
  • in collaboation with CHIPTS applied for Robert Wood Johnson’s Public Heath Serices and System Research Intitiative
  • Designated aging HIV population a new “special population”

Standards of Care

  • Developed 3 new standards: ADAP enrollment; Drug Reimbursement/Local Phrmacy Program; and Case Management, Housing
  • Revised standards for: benefits specialty; direct emergency financial assistance
  • hospice/skilled nursing
  • language/interpretation services
  • medical outpatient/specialty
  • residential, transitional
  • drafted 3 special populations guidelines: African-Americans, homeless, Latin@s
  • finalized new continuum of care
  • secured HRSA-funded Medical Care Coordination consultant and created transition planning process
  • submitted oral health comparative effectiveness proposal for NIH stimulus funding; proposal made it to final stage of formal evaluation comments


  • collaboration with Latino Task Force on membership recruitment, reaching Latin@ membership targets
  • developed new membership and orientation training plans
  • maintained compliance with HRSA membership requirements
  • filled majority of remaining vacancies
  • continued Consumer Caucus activities
  • HIV Service Round Table meetings with HIV+ folks in SPAs 3 & 8; developed tool to monitor consumer input from the events
  • developed a consumer mobilization database
  • held consumer Empowerment and Mobilization training


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Save City of LA AIDS Coordinators Office

Posted in hiv by SCHA-LA on November 2, 2009

Agenda Special PH 110409 SOCOD Fact Sheet CFS 101309

COD Fact Sheet CFS 101309

COD Special PH 2009 DOD Consolidation flyer11-04-09 shreddedribbonflyer-cityaidscoord

As we know, the State Office of AIDS has been virtually stripped of State funding for HIV-related services. Please think about this “consolidation” and consider the potential impact on people affected by HIV in the City of Los Angeles should the City AIDS Coordinator’s Office get subsumed into a larger body.


Call for Support for the Continued Existence

of the Commission on Disability and the Department on Disability


The City of Los Angeles Department on Disability (DOD) and the Commission on Disability (COD) is threatened in the City’s budget process, again. Los Angeles City Council is considering ELIMINATING the DOD and COD as they now exist, and merging their roles and functions into the Human Services Department, which is an amalgamation of three [former] City Departments – Commission on the Status of Women; Commission for Children, Youth and their Families; and the Human Relations Commission. Each year, DOD serves over 15,000 people with disabilities (including persons living with HIV/AIDS), and provides technical assistance to hundreds of organizations (private and public), as well as to local and international governments.


“MARGINAL COST SAVINGS” from cutbacks and merging of the Department will seriously impact our ability to provide opportunities for employment, health services, and all other essential resources for persons with disabilities and other marginalized populations; and it will curtail our ability to obtain both government and private funding for the benefit of all residents with disabilities.


“WHAT YOU CAN DO” – Express your views “in-person” by contacting the offices of the Mayor at (213) 978-0600, or; or contact City Councilmembers (see below or go to the City’s website at for contact information). MOST IMPORTANT: Attend the City’s Council Meetings to voice your support during Public Testimony.



Los Angeles City Hall

Board of Public Works

200 North Spring Street, Room 360,

Los Angeles


Wednesday, November 4th at 1:00pm

Each year, DOD services over 15,000 people with disabilities (including persons living with HIV/AIDS, and the hard-of-hearing and deaf communities), and provides technical assistance to hundreds of organizations (private and public), as well as to local and international governments. If consolidated, it will eliminate their ability to function as they now exist!

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