Tuesday, July 29, 2014

An Update on CFC and the Nurse Practice Act

[Crossposted from CDRNYS.ORG]
by Norain Siddiqui

July 26th marks the 24th anniversary of the Americans with Disabilities Act (ADA), and the nation is reminded that the government has a legal obligation to provide people with disabilities the same rights and protections that are awarded to the rest of the population.

In 2012, Governor Cuomo selected to implement the Community First Choice Option (CFC) in New York State. The Center for Disability Rights (CDR) and the disability community heralded this decision because CFC is a federal initiative that incentivizes the provision of long term services and supports in the community, as opposed to nursing facilities and other institutional settings. CFC will also provide the State with enhanced federal funding called FMAP (Federal Medical Assistance Percentage) which will allow New York to generate a net revenue of approximately $350 million every year if CFC is implemented correctly.

Many disability advocates are familiar with the Supreme Court’s 1999 Olmstead vs. L.C. decision. Among the most significant court decisions to be drawn from the ADA, it rules that states must provide services and supports to individuals with disabilities in the most integrated setting possible. This means that states cannot force people with disabilities into institutions when they can successfully live in the community. People with disabilities now have the legally enforceable right to remain in their own homes with the services and supports they need.

CFC and Olmstead prioritize supporting and serving people with disabilities in their own home, and implementing CFC in New York will help the State meet its required obligations under the Olmstead decision.

However, despite the fact that it has been a decade since Olmstead became law and over two years since the State selected CFC, New Yorkers with disabilities are still not reaping the benefits of community integration. This is extremely frustrating as our people have been fighting for the civil liberty to live how and where they choose for over twenty years.

The disability community lauds Governor Cuomo’s commitment to Olmstead and his plan to implement CFC, but there are still significant barriers to community-living that New Yorkers with disabilities face daily. Thousands of individuals still live in facilities and other institution-like settings, segregated against their will simply because the services they need are not available in their own home, either due to cost, level of care, or availability of aides, etc. CFC addresses these issues, which is why it is imperative that the State not delay its implementation.

To fully execute CFC and draw down the maximum amount of federal funding, an amendment to the Nurse Practice Act (NPA) is necessary. As written, the NPA limits access to health-related tasks to persons who are considered ‘self-directing,’ or individuals that can lead and control the delivery of their own services and supports.

This clause effectively discriminates against people based on the type and severity of their disabilities because some people cannot direct their own services. As per federal CFC regulations, services and supports must be delivered “without regard to the individual’s age, type or nature of disability, severity of disability, or the form of home and community-based attendant services and supports that the individual requires to lead an independent life.” Therefore, if the State fails to enact the NPA exemption, New York’s CFC State Plan will be dismissed by the federal government.

The health- related tasks that the NPA limits access to include certain procedures, such as catheter maintenance, ventilator care, suctioning, and insulin administration. These tasks are already being successfully performed by non-licensed individuals under a different program in New York, the Consumer Directed Personal Care Program. For years, self-advocates and their families have successfully trained individuals to perform nursing tasks, even for members who are unable to direct their own services.

The proposed amendments to the NPA will provide a structure train aides to perform these tasks, requiring supervision by licensed nurses, obligatory training for the home health aides performing these tasks, and other safety guidelines. The immediate result of these proposed changes will allow nurses to assign health-related tasks to a trained aide, but they will ultimately also increase cost efficacy, patient safety, patient care quality, and consumer satisfaction all while addressing the statewide nurse shortage issue.

This legislative session, CDR and other disability rights organizations led a strong campaign to amend the NPA so that CFC can be fully implemented. After discussions with the disability community, the New York State Nurses Association issued a memorandum in support of the proposed NPA amendments. This advocacy resulted in an assembly bill (A.10137) that was introduced by Assemblywoman Glick as well as a program bill (#37) issued by Governor Cuomo. Both A.10137 and Program Bill #37 allowed for the creation of an advanced home health aide (AHHA) which would be authorized to perform health-related tasks under the appropriate supervision and training by a licensed nurse. Unfortunately, neither piece of legislation was enacted this law-making season, resulting in further delay of CFC implementation.

Summary of Governor's Program Bill #37

Section 1 - Education Law Section 6908(1)(a)(v)
  • Grant NPA exemption for certain "advanced" tasks in accordance with the State Education Department and the Department of Health, including medication administration
  • Determine qualification, training, competency requirements for AHHAs, taking work group recommendations into account
  • State that advanced tasks may only be performed under licensed registered professional nurse
Section 2 - Public Health Law Section 3602(17)
  • Define AHHA as home health aides authorized to perform advanced tasks as set forth in above mentioned Education Law
  • Require DOH to issue regulations regarding AHHA authorization to perform said taks, including process for revoking or limiting authority under appropriate circumstances
Section 3 - Public Health Law Section 3613(9)
  • Establish registry of all advanced home health aides
Section 4 - AHHA Workgroup
  • Requires DOH to convene AHHA workgroup to provide guidance on tasks, types of medications, qualifications, training and education requirements, level of nurse supervision.
  • Workgroup must be comprised of individuals from academia with relevant expertise, home care representatives, hospice providers, nurses, nurse educators, home health aides, pharmacists, representative of individuals who are eligible to receive services performed by AHHAs, other relevant stake holders
However, the State has decided to go forth with the section of the Governor’s Program Bill that mandates the creation of an advanced home health aide workgroup. The purpose of this workgroup is to convene relevant stakeholders, professionals, and academics to establish the following:
  • Tasks that AHHA are authorized to perform
  • Types of medication AHHAs are permitted to administer
  • Required AHHA qualifications
  • AHHA training and education standards
  • Level of supervision
The workgroup's recommendations will guide the language for future legislation, so a balanced dialogue is key. The group is set to meet for the first time in mid-August of this year (2014) and will be comprised of:
  • Academics with relevant expertise
  • Home care representatives
  • Hospice providers
  • Nurses and nurse educators
  • Home health aides
  • Pharmacists
  • Invidiauls eligible to receive AHHA services and their representatives
  • Other relevant stake holders
This will provide a forum for self-advocates and disability rights’ groups to voice their requirements for the AHHA so that the broadest implementation of CFC is possible and the benefits are maximized.
CDR and the disability community will continue to advocate for the enactment of the NPA amendments, a timely implementation of CFC, and for the overall right for people with disabilities to live in the most integrated setting possible. In the twenty-four years since the ADA was signed, the plight of people with disabilities has been illuminated but there has not been nearly enough progress in attaining equal rights. It is dependent upon dedicated advocates to secure people with disabilities their basic civil liberties, and fully implementing the Community First Choice Option will be a victorious step in that direction.

For the Governor’s Program Bill #37 Memorandum, see: click here
For the full text of the Governor’s Program Bill #37, see: click here

Friday, June 6, 2014

Come to Albany on June 11th to FREE OUR PEOPLE!

There are two weeks left in the NYS legislative session and – despite public support by the Governor and the NYS Senate during the budget process – the legislature has still not amended the Nurse Practice Act to allow New York to fully implement the Community First Choice Option and FREE OUR PEOPLE! 

In addition to giving people with disabilities a REAL CHOICE in long term services and supports, New York State would receive over $340 million a year in extra federal funds after paying for a significant expansion in home and community based services.  And New York would continue to get that extra federal funding EVERY YEAR!

We have literally waited years for New York State to implement Community First Choice and FREE OUR PEOPLE!  Countless people have done action alerts, called their legislator, participated in countless meetings, protested in Albany, and even occupied the nursing union’s lobby for eight days!  As the budget came to a close – with assurances from leaders in the Assembly, we thought we had secured a victory.  Despite these assurances, the deal fell apart at the last minute. 

Enough is enough!

The time has come to get the job done! 

NYS ADAPTers and other disability advocates are headed to Albany on Wednesday, June 11th to make sure the legislation we need gets passed by the Assembly and Senate. 


Activists will be meeting in Albany, in the well of the Legislative Office Building (LOB) at 1 PM on June 11th.  From there, we will do a series of direct actions aimed at securing our right to live in the most integrated setting. 

In order to coordinate our efforts, please contact Dave Sutliff-Atias at datias@cdrnys.org or (585) 546-7510 to let us know if you have a group coming to Albany. 

Wednesday, June 4, 2014

Disability Awareness Day

On May 19th, over 40 activists from around the state traveled to Albany for the 2014 NYS Assembly Disability Awareness Day festivities.  Yes, we’re aware of the irony. 

Upon arrival, we preceded to make our presence known and told the Speaker of the Assembly exactly what we thought of the Assembly’s lack of effort to get changes made to the Nurse Practice Act.  

Banners in The Well

Speaker Silver admiring our banners

We then split up and began visiting key legislators in all of this mess, including Higher Ed Committee Chair Deborah Glick and Assembly Majority Leader Joseph Morelle.  

On our way to Glick & Morelle

Speaking with Majority Leader Morelle's staff

A number of us were prepared that day to be arrested for Civil Disobedience, but we decided that the time was not right.  We did promise all of the movers and shakers that if a legislative remedy was not at hand before the finish of this year’s session (scheduled for June 19th) that we would be back and we will be getting arrested. 

Let’s see just how aware of disabilities our Assembly representatives really are.

Will people with disabilities get the shaft, yet again?

Tuesday, April 29, 2014

Albany Lied to Us

This blog has been pretty silent over the past few weeks.  Last we posted, disability advocates left Albany exhausted, but triumphant, confident that the work we did would be resulting in the Community First Choice being implemented in New York State.

But then we left it up to the elected officials and that's where it went all wrong.

We didn't have much of a choice.  When we last were in Albany, the Governor's administration, the NYS Assembly, and the NYS Senate agreed on language that would amend the Nurse Practice Act in ways that the federal government would accept.  This acceptance would bring $340 million into New York State and allow people with disabilities to live in the most integrated setting possible.  You can read about it in more detail here.

These changes didn't make it into the state budget in time, therefore it would have to be done legislatively once the Senate and Assembly come back into session, which they did on April 28th.  While the Legislature was out, our sources tell us that Assemblywoman Deborah Glick and the rest of the NYS Assembly decided on some payback by getting the language that had been agreed upon changed.  As it stands today, here is what would change in the Nurse Practice Act:

*Non-licensed nurses can administer medication.

That's it. No more mention of ventilator care, tracheostomy care, catheters, or any other dealings with medical equipment that are absolutely necessary to keep people with disabilities in their own homes and out of institutions. 

Assemblywoman Glick and the Assembly lied to the Disability Community, Governor Cuomo,  Senate IDC Leader Klein and Senate Leader Skelos allowed this language to be changed.  They seem to think that we're going to accept this without a fight.

Here's the thing...

When dozens of activists holed up at the NYSNA office for 8 days and fought for our civil and human rights, that was done without planning.  When we marched into that building, there was no intention of not leaving.

Now we get to plan a long-term, coordinated campaign to show voting citizens of New York State exactly how our elected representatives feel about people with disabilities.

And remember...we're all going to be persons with disabilities at some point.  

So, feel free to share this and other blog posts and come back often as this blog will be updated every step of the way to illustrate how those in Albany see people with disabilities as a cash crop.


 UPDATE: As more information comes in, we realize that NYSNA is still committed to real change of the Nurse Practice Act as we have this commitment in writing. This blog entry reflects that.

Tuesday, April 1, 2014

If CFC Is Not In The Budget, Why Are We Celebrating?

Majority Leader Morelle & Bruce Darling
Via Bruce Darling:

Over the last few months, disability rights activists and advocates did an amazing job getting the state to move forward with a proposal to authorize nurse delegation in New York so that people who need assistance with health related tasks could live independently in the community and the state could fully implement the Community First Choice Option.  These efforts culminated with a week-long sit-in at the offices of the NYS Nurses Association to persuade the union to stop opposing this policy change.

We were successful in persuading the nurses to change their position.  Ultimately, the Governor, Assembly, and Senate all agreed to make the necessary changes to allow for nurse delegation but they literally ran out of time before the budget bills needed to be printed.  All three parties have assured us that they are committed to moving forward with nurse delegation outside the budget process.

I am happy to report that the Governor has submitted language to the Assembly and Senate that – when passed and signed into law - will allow the state to establish nurse delegation and fully implement the Community First Choice Option.  Given the agreement that already exists, we expect that the legislature will take action on this when they return to Albany.  We will keep you posted.

It is also important to acknowledge the work of those in the administration, Senate and Assembly who also worked very hard to make this happen.  We appreciate their efforts and commitment to making New York State a leader in Community Choice.  Together we will FREE OUR PEOPLE!

Great work everyone!

Friday, March 28, 2014

Bruce Darling and Bobbi Wallach Interviewed about CFC

Upon returning home from our 8 day stay in Albany, two ADAPTers, Bruce Darling & Bobbi Wallach were interviewed by Rachel Barnhart of Channel 8 in Rochester, NY.  Here's the interview.  (Sorry, there's an ad first)

Tuesday, March 25, 2014

Come to Albany Wednesday!!!

Support ADAPT’s action – come to Albany tomorrow!
The New York State Nursing Association (NYSNA) is holding their Lobby Day tomorrow, March 26th in Albany. ADAPT has now occupied the NYSNA office in Albany for almost 150 hours in an attempt to garner NYSNA’s support for a Nurse Practice Act (NPA) amendment needed for the full implementation of the Community First Choice Option (CFC). ADAPT and NYSNA have reached an agreement on the necessary budget language, however NYSNA must ensure the Assembly supports this change in the final budget agreement.  ADAPT needs people with disabilities and advocates to join them for tomorrow’s rally at NYSNA’s Lobby Day.
NYSNA plans to talk about “safe staffing”. Let’s talk about the rights of people with disabilities to live in the community!
Meet at McDonald's along the concourse at Empire Center at 11:30 AM. 
For questions, email Dave Atias: dave34 [at] gmail [dot] com
For more information on ADAPT’s activities so far, visit these links:

Further Explanation

I have been posting events as they have been happening on different social media outlets.  Folks with union ties have asked why we're targeting the New York State Nurses Association.  The entire situation is pretty complicated, but here is how I answered:

Community First Choice is a federal program attached to ACA that allows states to choose to participate. If they choose to do (which NY has done) they have to make changes to how they deliver and pay for services for people with disabilities that would get rid of the institutional bias. That means resources would go as much to (or more to) home-based services than institutional-based. States that do this get 6% matching funds from the Feds. So states not only save money by keeping people in their own homes but get extra money for doing it.

In NY, the Nurse Practice Act, in its current form will not let attendants perform certain tasks (see the above blog page) and the Feds will not approve CFC for our state while these are restricted. The amendments to the NPA that are needed have to go thru the Higher Ed committee of the Assembly. That is where it is stuck. We're told that NYSNA is the "progressive" org that is putting pressure on the Chair of that committee to not let NPA be amended. In our talks with NYSNA, they have told us that they are holding things up.

So we are dealing with both NYSNA and one member of the Assembly, Deborah Glick. And I gotta be honest, the silence of the "progressive" community has been extremely disappointing. 

For more explanation on Assemblywoman Glick and her role in this, visit: http://www.adapt.org/main.glick 

NYSNA's Gym and Showers

The New York State Nurses Association prides itself on standing up to corporate greed.  Does greed include using rank-and-file dues for a private gym, complete with accessible showers? 

ADAPT Takes NYSNA Office Space

Happening now...

Hour 137: Good Morning!

Is it Community First Choice, yet?

A Health Care Checkup

The following Op-Ed is a nice nod to ADAPT's effort to bring CFC to New York, though there are concerns.
How long has ADAPT been at NYSNA?

First, who will be on this commission?  Will there be anything more than token representation of the disability community?  Second, doing something cheaper is admirable, but that seems to be the main motivation behind looking at health care.  People's rights over being able to decide over who touches an individual's body should be the main issue.  Cheaper is good, but an evolved society doesn't put money over civil rights.

But overall, we're good with what the TU is saying.

From the Times Union, Albany, NY:

Our opinion: In the debate over who should provide care to the disabled, the sick or the elderly, what’s in the best interests of patients is the real question.

Last week’s sit-in at the New York State Nurses Association is just one symptom of a broader issue: how we balance our desire for quality care with our demand for affordable care.
It’s time for New York state to take a deeper look.

This isn’t a problem we should be resolving one ache at a time. As aging baby boomers require more health services, the state needs to be looking comprehensively at how it helps — and hinders — the health care industry in providing the best possible service at a cost individuals and society can afford.

We might start by acknowledging that there isn’t necessarily a clear right and wrong side in disagreements like the one between NYSNA, which is a union of nurses, and ADAPT, short for Americans Disabled for Attendant Programs Today, which staged the demonstration.

ADAPT wants NYSNA to support a proposed amendment to the Nurse Practice Act, which allows only nurses to perform certain tasks, such as administering medication or helping patients with equipment like ventilators. Activists for the disabled want the law to allow certain care to be done in people’s homes by “advanced home health aides,” which would both bring down the cost and allow more people to provide the services.  Read More
What do YOU think?

Monday, March 24, 2014

Jensen Caraballo at NYSNA

More Than One Hundred Hours of Continuous ADAPT Activism

The ADAPT activists who have occupied the offices of the New York State Nurses Association appreciate the outpouring of support from the disability community and others across the nation. It has been over 100 hours since members of NYS ADAPT started the occupation of the NYSNA offices because the union opposes amending the Nurse Practice Act to allow attendants to do health related tasks. Throughout the occupation, we have negotiated with the nurses’ union in good faith to get their support for nurse delegation so people who need assistance with health-related tasks - including medication administration, ventilator care, assistance with catheters, suppositories and feeding tubes - can get that assistance in the community from attendants.

By allowing advanced home health aides to do health related tasks, New York State will be able to implement the Community First Choice (CFC) Option. This Medicaid State Plan Option would assure that any individual eligible for institutional placement is able to access services and supports to live in the community. Under CFC, NYS would receive additional federal funding and would significantly expand the services and supports for people with disabilities living independently. Additionally, after expanding the availability of services, it is estimated that CFC – at full implementation – would generate an extra $340 million a year, every year.

On Wednesday, when we first arrived at NYSNA, there was significant disagreement about the provision of assistance with health related tasks, and we were concerned that NYSNA’s advocacy was focused on preventing people with disabilities from getting assistance with key health related tasks to live independently. We explained that “full implementation of the Community First Choice Option” means that no person with a disability should be forced into an institution because they cannot get assistance with health related tasks.

Through our negotiations, we secured a statement from NYSNA supporting “the rights of all New Yorkers to be independent in their own homes, and the rights to any and all care needed to maintain that independence.” In that same statement, NYSNA said that “To be clear, NYSNA fully supports the implementation of the Community First Choice program.” NYSNA also proposed alternative legislative language amending NYS education law to allow advanced home health aides to do health related tasks. We are now being told that NYSNA’s language creates a contradiction between education law that would authorize nurse delegation and the Nurse Practice Act in health law that precludes this.

We are not union lobbyists or lawyers; nor are we governmental officials or legislators. We are people with disabilities who want to secure our civil right to live in freedom in the community. We are also activists, and we will hold the union, legislature and our governmental officials accountable.

The ADAPT activists who have occupied the offices of the New York State Nurses Association appreciate the outpouring of support from the disability community and others across the nation. It has been over 100 hours since members of NYS ADAPT started the occupation of the NYSNA offices because the union opposes amending the Nurse Practice Act to allow attendants to do health related tasks. Throughout the occupation, we have negotiated with the nurses’ union in good faith to get their support for nurse delegation so people who need assistance with health-related tasks - including medication administration, ventilator care, assistance with catheters, suppositories and feeding tubes - can get that assistance in the community from attendants.

We have fought for 24 years to secure the right to live in the community rather than be forced into institutions. We will not wait any longer, so NYS ADAPT is continuing our occupation of the NYSNA offices.


Because of the legal problems that appear to be created by NYSNA's proposed language, NYS ADAPT demands that NYSNA immediately provide a compelling legal analysis demonstrating that their language does not - in fact - create a contradiction between health and education law. If NYSNA is unable to provide such a compelling legal argument, it must agree to address the contradiction by supporting the addition of a “notwithstanding clause” to their language or support an amendment to the Nurse Practice Act.

NYS ADAPT further demands that the New York State Assembly Democrats ensure the civil rights of people with disabilities by supporting budget language that authorizes advanced home health aides to do health related tasks, and if necessary, amends the Nurse Practice Act in order to fully implement the Community First Choice Option, end the Medicaid institutional bias, and FREE OUR PEOPLE!

[Taken directly from http://www.adapt.org/main.nysna]

What Happens if NPA is NOT Amended?

1.  New York will not be able to broadly implement CFC and people with all types of disabilities - whether or not they need assistance with health-related tasks - will not have a right to receive services and supports in the community.

2.  People with dementia - who currently have extremely limited community-based options in New York - will continue to be forced into nursing facilities.

3.  Families of individuals with developmental disabilities who would have received services and supports under CFC will continue to languish on waiting lists for assistance.

4.  People with mental health disabilities will not receive CFC services and supports needed to be successful in living independently and will continue to remain in - or cycle in and out of - expensive institutional settings.

5.  New York State won't generate approximately $340 million a year in extra federal funds from the enhanced federal funding associated with CFC.

Why Have We Taken Over NYSNA Headquarters?

The New York State Nurses Association (NYSNA) is the union that is the driving force behind resistance to amending the Nurse Practice Act (NPA). 

On Wednesday, March 19th, a couple of vans full of New York ADAPT members drove from Rochester to Albany to confront Assemblywoman Glick, who is the ONE person standing in the way in the Assembly from the amendments.  She is the chair of the Higher Education Committee and the amendments need to go through that committee.  When she gave us the runaround, we decided to stop by the NYSNA headquarters to make sure the nurses' union knew that we have every intent on getting these amendments through. 

Over a dozen of us entered their building and went directly into the staff office part of the building and began chanting.  Our demand was to talk to someone with the authority to negotiate language on the amendments.  We ended up on a phone call to NYC with their lawyer...Leon. 

We had language that we created that would amend the NPA that would bring the Community First Choice (CFC) to New York.  The three hour conversation was a test of patience.  Leon went 'round and 'round, making points that had nothing to do with what we were trying to accomplish and our proposed language.  We took a break so that Leon could talk to Bryan O'Malley at Consumer Directed Personal Assistance Association of NYS (CDPAANYS).  While we waited, we made ourselves comfortable in the lobby.  It was after 11pm when word came that there would be no resolution that night.  We decided to stay in the lobby...and never left!

It's been 5 days since.  We will try to capture just what has transpired since, where things are going and actions you can take to get this moving.  We'll have video, pictures and guest blog entries.  Stay tuned, share our stuff and help us FREE OUR PEOPLE!