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Tag: Advocacy

Update from Executive Director Bryan O’Malley on 30 Day Amendments

Written on . Posted in Updates.

On Thursday evening, the Governor released amendments to her budget. These amendments are an annual occurrence and are meant to be technical fixes to address inevitable drafting errors in a series of bills that are cumulatively thousands of pages of text. This year, they were far from just technical fixes. Among other things, the Governor proposed 15 pages of new changes that would, in many cases, fundamentally change CDPAP (spoiler alert – it’s always for the worse).

The bill would eliminate Designated Representatives, or DRs. DRs have been a part of CDPAP since the program was created in 1980. The DR acts as the consumer when the consumer themselves are unable to self-direct their own care. This change will mean that no child will be able to use CDPAP. Many with developmental disabilities who use CDPAP to complement their OPWDD self-direction budgets use a DR. Those with Alzheimer’s disease or dementia rely on a DR. And thousands of others. This change would leave tens of thousands of people, if not over 100,000 people, suddenly ineligible for CDPAP, with no identifiable way for them to receive services in the current workforce crisis.

The bill will require state mandated training for PAs. A hallmark of CDPA has always been that the consumer – not an agency and not the state – is responsible for recruiting, hiring, training, supervising, and terminating their own staff. This has worked for over 40 years. Governor Hochul would prevent a PA from being able to work until they have completed a state-mandated training course, removing one of the core pillars of consumer responsibility that is a founding principle of the program.

The bill will set maximum daily and weekly limits on the hours PAs can work. Some FIs allow overtime. Some do not. Some consumers want PAs to work overtime. Some consumers need PAs to work overtime. Some consumers do not. Governor Hochul wants to tell consumers and PAs how many hours the PA can work each day and each week, taking more control away from the consumer. They do not say what those hour limits would be.

The bill will limit the number of FIs that a plan or a county can have in their network. The state’s position has always been clear – contracting is a process between two private third parties that they do not get involved in. The Governor wants to limit the number of FIs that a plan and county can now have in their network, limiting consumer choice along with it. The number of FIs that will be allowed is not identified.

The bill prevents an agency from offering home care and CDPAP. Sometimes, consumers want to be able to mix CDPAP and home care services, filling some hours with a personal care aide through “traditional” services and the rest through CDPA. This can happen for many reasons. They might have one person they want as their PA, but cannot or do not want to hire others and want an agency to send people. They might have a particular service they are not comfortable training a PA on. Their PA(s) might not be available on a particular day. In these instances, being able to use one agency for both “traditional” personal care and CDPAP can make life much easier. The Governor’s bill would prevent an agency offering CDPAP from being a LHCSA in Medicaid.

The bill prevents insurance companies from being FIs or LHCSAs. Ok, I said mostly bad. This is actually a good idea – and one that we had codified years back and the Cuomo administration repealed with the RFO. The insurance companies are the payors. They should not also be allowed to be the payee. Imagine going to a job and getting to set your own wage! Worse, the insurance control the networks, and often (though they aren’t supposed to) direct consumers to particular FIs or LHCSAs. This is a clear conflict of interest and eliminating the practice is a good idea.

Clearly – the next few months are going to be a long road, and we are going to need you – and your networks. If you are not a member of CDANY, please consider joining for just $22.50 a year. The more members we have – the stronger we are. Plus, we’ll send you a cool CDANY sticker!! If you’re already an individual member, thank you.

If you got this email forwarded from someone you know, please sign up to get updates. And, maybe consider joining too.

Take action today to tell your legislators and Governor Hochul that PAs aren’t second class home care workers and they cannot undo all the progress we’ve made on wages and cut wages and benefits to levels we haven’t seen in over half a decade.

If you don’t already, follow CDANY on whatever social media you use – Twitter,  Facebook, Instagram, and Threads. (If you follow CDPAANYS, you might not see posts made on the CDANY pages.)

Then, be ready. You’re going to get a lot of emails over the next 45 days or so. We will have more campaigns asking you to email your legislators and the Governor on these other critical issues. We’ll be announcing events – in Albany and around the state. We’ll be giving you updates on how things are going here in Albany. We will give you all the tools to be the best advocate you can be – at whatever level you can.

Because this is YOUR program. It is your life. Fight for it.

Thank you.

Bryan

Frequently Asked Questions: 2024 Advocacy Day – February 12, 2024

Written on . Posted in Uncategorized.

How do I sign up?

Please register for Advocacy Day using our online form.

Where is it?

Advocacy Day registration and check-in is in the Well of the Legislative Office Building in Albany, which is part of the Empire State Plaza. The street address of the Legislative Office Building is 198 State Street, Albany NY 12210.

If you are parking in the V-Lot parking area, enter through the elevator to the Concourse level. The Concourse is a long hallway with many businesses on both sides. Follow overhead signs toward “Legislative Office Building.” Please note: The V-Lot fills up very early. If you need accessible parking, it is advised to call ahead to reserve it. Link to Concourse map.

You will need to pass through security to enter the Well. You do not need to remove your shoes. Please review the list of banned items and leave those at home. They are very strict about scissors, tape, and speakers!

What time should I arrive?

ARRIVAL TIME IS 10:00 AM IN THE WELL!

This is a very busy time of year and there will be many visitors passing through security. If you can, we suggest you allow a minimum of 30 minutes to find your bearings and pass through security.

Who will be there?

CDANY and NYAIL will both have staff present to help attendees check in. It varies from year to year, but there are usually at least a couple hundred people present in the Well – consumers, personal assistants, fiscal intermediary staff, community organizers and advocates, reporters, and more.

Speakers from both houses of the Legislature, the Assembly and the Senate, will also be present to address the group.

What should I bring?

We will provide meeting materials and t-shirts to attendees who register ahead of time. In terms of other items – it is advisable to carry your essential healthcare items plus wallet, keys, phone.

DO NOT BRING knives (including small pocket knives on keychains) or other sharp objects such as nail clippers or other items that could possibly be categorized as a weapon. Further, potentially disruptive items such as whistles or noisemakers are not allowed.

Where do I park?

Visitors to the Empire State Plaza who arrive by private vehicle typically use the V-Lot parking garage. There are several garages off exit 3 from I-787. Additional parking information can be found here. NOTE: The parking garages all take credit or debit cards, but not cash. 

If you need to reserve an accessible parking space, please contact Nicole Mastroianni (nmastroianni@ilny.org) by Monday, January 29.

What should I wear?

We suggest wearing comfortable, clean clothing. There is no specific dress code. Plus you will be provided a cool blue CDANY t-shirt.

If you are sick, please stay home.

Is transportation provided?

Advocacy Day attendees are responsible for getting to and from Albany on their own. However, some of our members are providing bus transportation. We recommend contacting your fiscal intermediary to learn what they may offer.

CDANY is offering travel scholarships for eligible consumers to help offset costs. We will provide as much assistance as possible; however, scholarships are not guaranteed to cover all costs.

Will CDANY schedule my meetings for me?

In the spirit of self-direction, attendees are responsible for scheduling their own meetings with your representatives. It is recommended that you coordinate with your FI or other consumers you know are attending in order to minimize repeat meetings with Legislators.

For more information on how to schedule your meetings, check out our resource.

Who should I schedule my meetings with?

The State Legislature in Albany includes two houses: the Assembly and the Senate. Every New York resident has one State Senator and one State Assemblymember. These are your state representatives, which are different from federal representatives (Congress and U.S. Senate).

You can look up your elected officials using the “Find Officials” tool at our Action Center.

What time should I schedule my meetings?

Please avoid scheduling legislative meetings between 11:00 and 12:15 so that we can show our strength in numbers during the rally in the Well.

How does a meeting work?
Legislative meetings are typically 15 to 30 minutes long. You will likely meet with a member of legislative staff, not the member themselves. Before going into the meeting, if you are in a group, identify a “run of show” – who will say what, in what order?

For detailed support and meeting tips, please view our resource here.

I can’t go to Advocacy Day. How else can I help?
If you absolutely cannot make it work to come to Albany, that’s okay! There are many alternative ways you can show support and take action:

  • Sign up as an advocate and tell us about you – what skills or talents you have or want to develop.
  • Join as an Individual Member of CDANY for just $22.50.
  • Schedule a meeting with your elected officials at the district office. Many are conducting meetings via Zoom, so you don’t even need to leave the house.
  • Share Advocacy Day and other information with your family and friends and encourage them to get involved and take action.