A Chance for Parents to Voice their Concerns to Transformation Panel about the implementation of the Transformation Agenda
CLICK FOR A PDF VERSION OF THE MINUTES: 5.19 minutes with wrap-up FINAL
IN ATTENDANCE:
FROM NYC Metropolitan Area:
Over 100 family members, self-advocates and providers.
FROM NYC FAIR:
Elly Rufer, Meri Krassner, Michael Bolton, Cecilia Reilly, Jim Karpe, Lori Podvesker, Lynn Decker, Mariette Bates, Amy Bittinger, Ben Sahl, Amy Applebaum, Kathy Nowak members of NYC FAIR
TRANSFORMATION AGENDA PANEL MEMBERS
- Neil Mitchell – Special Assistant to the Commissioner
- Steve Freeman – Freeman & Abelson (former CEO of YAI)
- Peter Pierri – Executive Director of the InterAgency Council
- Michael Seeriter – New York State Rehabilitation Association
- Susan Constantino – Cerebral Palsy Associations of New York State
Elly Rufer- Welcome
Opened the meeting by introducing NYC FAIR, telling a little about its history and growth. She welcomed and introduced the Panel, then asked everyone on the Executive
Committee to raise their hands, then raised them by boro. She also welcomed the head and members of GROW, a Westchester based organization, to the meeting.
Meri Krassner- Overview of issues
Hi – my name is Meri Krassner and I am also on the Executive Committee of NYC FAIR.
We want to address all the areas that you, the Panel Members, have been asked to advise on in implementing the Transformation Agenda.
There has been a lot of reaction – more than we will be able to cover here so I have distilled reactions from meetings NYC FAIR has had and also from remarks submitted online.
Firstly we need you, as Panel members, to look at the Transformation Agenda and be sure that it addresses everyone’s needs, not just those who can live and work independently.
Family members desperately need advocates in Albany who recognize the broad spectrum of abilities and disabilities that make up our community and therefore there must be a broad spectrum of services. We hope you understand this and can make OPW understand this –
One overarching concern is the way OPW goes about implementing changes. Their record is not good; one example is making fundamental change without sufficient resources to implement the change- the Front Door for example. Another example is implementing a program and changing the rules in the middle which makes things worse like the October 2014 changes to self-direction. Not a good track record.
Many of the proposals are in direct conflict with Person Centered Planning. How will these two concepts be reconciled?
When it comes to HOUSING:
There is an assumption in the Agreement that current housing choices are somehow ‘not in the community’ – that is not a given and shouldn’t be considered so.
We support the effort being made to help those who can move into more independent settings while rejecting that this is something for everyone.
We are concerned that OPW is not recognizing that breaking up slightly larger settings into smaller settings loses economies of scale that will require cutbacks in direct service, especially for those who require the most care.
Competitive Employment is another example of something that is right for some but certainly not for all –it won’t work if OPW doesn’t acknowledge the issues with employers, other employees and the degree of support necessary to make it work
There also needs to be good options for those who cannot sustain competitive employment
Another worrisome bit is Self Direction
The statistics say that only a small % of the population are using Self Direction and yet it is not working for those people – the rule change in October derailed the planning on even those trying to make it work
So How is it supposed to work for those who do not have the time, interest in or ability to make their way through the morass of paperwork
Managed Care: What comes up again and again – the issue isn’t with the medical part, but the kind of supports that people with disabilities need don’t fit a medical model. any Managed Care entity has to understand and provide the support people with disabilities need.
And this need doesn’t go away.
As to System Sustainability – how can you plan and figure out system sustainability without a census of who is out there and what their level of need is.
What changes have you seen at OPW, or reassurances have you been given, that your recommendations will not be ignored, fumbled, or mangled? What can we do to make sure that your work is not just a ‘show”
Pete Pierri:
There has to be recognition of the diversity of the people who are served by OPWDD.As the Transformation Agenda is discussed there is a strong emphasis on independent living and working. This has led people to believe that other people have been forgotten because their issues are not being discussed as openly or as completely.
In the Panel meetings the discussion always comes back to the people with fewer capabilities and more medical and complex needs. This has been brought up in every single discussion.
Stephen Freeman:
We have had no reassurance that our recommendations will be activated but we have hope, have seen openness from OPW. Providers are paralyzed, families are filled with anxiety. Have to give the Commissioner credit, she initiated this Panel, she is open and has a willingness to listen. But listening without action is no good. She is willing to move. The first thing they are looking at is communication – the way they communicate is horrendous, the words the mechanisms are horrible.
They use dispassionate and complex language but they are willing to move forward and make changes.
Forty years ago, this was driven by parents marching. and then parents got comfortable, a new kind of advocacy to get some more of what we want.
Michael Seerighter:
OPW deserves a lot of credit for starting the conversation. Government tends govern by crisis management which is a terrible way to govern. I am encouraged by the discussion but it has to be a broad perspective, for everyone everywhere.
Communication is a major major problem, there is an obvious disconnect between what parents perception is and what is really happening, there is poor communication at all levels.
My agency, New York City Rehabilitation Association, is focused on employment that is the lens through which we look at world. We need more supports for those who cannot handle competitive employment, we need to look at what role should people with ID/DD have?
We talk about doing away with models that serve people today before the new models are built…But OPW is listening. Last Friday, they made modifications to their Transformation Plan. There was hope that 50% of the population would be able to have competitive employment but they are silent on the other 50%. “Now make sure that everyone continues to have a job”
(Interruption by Roy interrupting him and objecting)
We must be a forceful voice.
Elly :
This goes to communication
Susan Constantino:
We support people with the most significant disabilities, so this touches my heart. We have apartments with four people, and they call it an institution because it is an ICF – and that upsets families.
Don’t know if the recommendations will be fumbled, but the recommendations need to be what we believe, we will make it our own.
There has been a lot of info so far, but no recommendations. When they are in place, will they make sense.
We need another meeting in September.
The question is “what is already decided? What is not on the table?”
Managed care is here but we don’t know how it would work, we may need to bring in experts, and we will must be able to learn.
The Acting Commissioner wants to hear, give her a chance. It is hard because we have gone for 8 years with no one listening but we have to give her a chance.
Let’s have a meeting like this again.
Pete Pierri
At the last panel meeting there was a blunt discussion of how parents no longer trust OPW. This is because of all the OPW changes – being told what is being changed but not what is going to replace it. It sounds like “You are taking stuff away from me” but calling it different words.
What kind of housing support, and how are you going to get it, When there is no affordable housing…
Elly: and we are not moving to Albany
Pete: You can’t change it until you have the new thing in place
Neil Mitchell:
I do a lot of coordination and I will be working on organizing the listening sessions. This is all the Acting Commissioner’s idea. How will people continue to live, this is real important stuff. Our purpose is to help people live richer lives, it means something
We aim to help them, the most deserving people in our society. We want options, solutions, and choices, and to have them integrated into the community.
The vision of the Transformation Panel is to support each person in the way they need to be taken care of. This is not about ripping stuff away from them, it is the opposite. It is about taking this and building it up more.
Group homes are not going away, there will be new standards for HCBS settings. We are going to give people MORE support.
We have negotiated with CMS. We believe that people should have more control. Self –direction is now more scalable – we can offer it to more people. It is about taking the system that has been built and adding additional options so if they want to create their own reality, then they have the ability to do so.
We are assessing needs, working with their families one-at-time, so that their treatment team can decide on how to treat them.
Vision of the transformation panel is to support each person in the way that they need to be taken care of.
This is not about ripping stuff away from them. It is the opposite. Taking this, and building it up more.Group homes are not going away…. Self-direction is now more scalable— we can offer it to more people. It is not about taking things away from people, it is about taking the system that has been built… adding additional options, so if they want to create their own reality, then they have the ability to do so.
We will be assessing needs, working with their families, one-at-a-time, so that their treatment team can decide how to treat them.
Elly–
Well, You got the room going: Out into the community is really offensive
“Daughters house is going ‘out into the community’ for a walk
Meri–
They live in the community now. They live in neighborhoods they have neighborhoods
They are not in an institution today– as Susan said.
Steven Freeman
This is important. De-mystify. Everyone looks around and says, cool, I am on a blue ribbon panel and then it starts to unravel. Work with the people who are in power. As someone said to me if you are not at the table, you’re probably on the menu.
As they discuss Self Direction, employment and housing. This is a journey.
OPW has not reached out and said what the journey is…
Pete Pierri
Transformation Panel is doing three things: Incrementalizing the discussion. Cutting it into smaller, bite size pieces. We do need to serve those with severe disabilities. If they did not have severe disabilities, they would be out there working. We are just now beginning to be heard on this.
If you are not told what is going on, then you will make up your own stories….
Communication is key.
From the audience: [We deserve a real commissioner] How many real commissioners are there?
Michael Seerighter
Office of Mental Health, Office ? of have real commissioners.
For what it is worth, this is a difficult administration to work for [applause]
I used to work for them, and I left….
We have someone who is in place and working….
Might be acting for 4 years or more. We have to work with whoever is in place…
Elly:
We don’t know why there is not a commissioner.
Neil–
We don’t know everything. I started my career in advocacy.
Government is here to listen and respond. It is possible for us to get out of touch….
Family member: Know the people who your are making decisions about…
HOUSING
Margaret Puddington:
We did a survey through Survey Monkey on what is most important to families. I want to tell you about the findings. We had over 3K responses. The top response was the need for 24 hour housing
Questions about Employment got a 65% response and help with challenging behavior.
Last year there was un-spent money at OPWDD which is one reason we did not get more money.
There is money that can be used for certified housing.
There is a protocol to develop more housing but the Developmental Disabilities Regional Offices DDROs do not know this and haven’t taken advantage of this.
From the Audience Cause no one can get through the Front Door
Elly-
At my daughter’s house the lease is up but we were given a rate from 2008 to find new housing.
Barbara Masur of Grow
Why is it that there is money for those coming from residential schools, but not for those coming from family home?
Susan Constantino
Children are sent to Residential Schools because they have needs that can’t be met in traditional settings, their needs are so extensive but that is an excellent question. At residential schools, children at 21 need to leave. But hey need 24/7 care. They need to go.
But we need to have a larger number of choices….
People at schools are Priority 1. They go first.
From the Audience: There are not enough” places.
Roy Probeyan Long Island Task Force
Fought for this in 1981 for students who were aging out because it was dangerous for the family, for a 21 year old to return home. We got three bills passed mandating funding for the 21 year olds.
It can be dangerous for 21 year olds who had to be placed to return home. Got three bills passed mandating funding for the 21 year olds.
There is no law mandating funding for the people who are living at home.
Family member—
We have two sons ready to place in a residence. Who do we go to? How do we do that?
Pete Pierri
Find an agency and ask them to put together a proposal.
Don’t stop until you get what you want.
The system we currently have does not treat all people equally….
No one likes that…. Don’t pit one person against another.
We are all in this together, and we have to make it work together.
Steve Freeman
We are working to expand the menu, not limiting it.
Add Choices, not remove.
You have to give us more options—there are those who can live in 12 person homes.
Woman from Grow
My son lived happily with ten people for 35 years…
I grew up with 5 children and so we had 7 people living in my house.
You need to build houses for those on the waiting list.
EMPLOYMENT
From the audience–
1.How can parents access the panel?
2.We do self-direction …. How can we fit what we need into the budget…?
Can’t do it.
3.My daughter needs 24/7-supervision she has- epilepsy and behaviors.
We are at the end of our rope!
You shutting Fineson, We need housing on that land, don’t sell it.
Michael Seerighter
I am deeply concerned about minimum wage increase….we should be having a larger conversation.
We cannot recruit and retain people who can provide the services!
Quality of services is directly related to the relationship between the individual and worker. The minimum wage increase without considering our staff is a catastrophic problem.
Peter Pierri
With minimum wage the take away is they are not acknowledging our workers needs. They are having hearings about mandating $15 for fast-food workers. We can all show up at those meetings.
Don’t be against anyone earning $15. Good for them, they deserve it.
The people who provide services to our people deserve at least that much.
Our direct support workers deserve nothing less!
Michael Seerighter
We were having exactly that same conversation with the governor’s office yesterday.
Organizations that are providers need increases in funding to provide that living wage.
$9 an hour is nowhere enough to sustain a family. Most Direct Support Workers have more than one job. I did when I was one.
Jackie from Snack …
Our kids, they are not going to be able to go to a job.
There are no residences, no day programs. What should we do?
Peter Pierri
Nothing in OPW policy says: No day programs. If they need day program, then seek it.
If no spots, then they need to be created. If for some reason the agency cannot provide, then go to a DDRO.
There is money for services.
Jackie Half the people cannot get a waiver, because they cannot get into the Front Door.
MANAGED CARE
Sandy Napor
– My son currently gets services from a variety of agencies.
Will he have to withdraw from the programs that he loves and that help him so much?
If he is in a DISCO
Steve Freeman
No one knows.
DISCOs are provider agencies starting their own insurance company.
They are putting applications together now…they do not want there to be denial of services….
Any one agency can be in multiple discos. But there are none yet….
Family Member in Audience—
But if something is denied there is no due process, no appeals process.
Pete Pierri
There is an appeals process, they will get the word out.
Any Managed Care company, most people go to a doctor who is signed up with multiple managed care companies. We believe that most providers will be able to sign up with multiple Managed Care companies.
If someone can get a job for a short amount of time, that is a good thing.
OPW must make a commitment that you can get full time day support, so that your grown son or daughter is involved in something meaningful all day…
Neil Mitchell
There is an email address you can access on the web site. It also has all the agendas.
Tranformation.panel@opwdd.ny.gov
Family Member
Have heard about FIDA, those who are covered by both Medicaid and Medicare
Susan Constantino
So many questions, and no one to ask.
The Transformation Panel is here to listen. Come back.
We need another meeting. There are so many questions; I feel badly that there is no time to answer….
We need to make sure that our recommendations deal with this.
There are no answers, we need to figure out how can we make this better. I hope this has not been everyone’s experience. Email me and tell me how you want to get information.
Part of the fear you feel is that you do not have answers and no one is listening.
Our obligation is to listen to you and get answers.
We need to tell OPWDD: People need answers.
And, you need to turn out for the meetings.
Michael Seerighter–
There is a need for conversation among the panel members to establish regular communication out to the families. There should be email, web site updates, and fireside chats.
You are doing what needs to be done.
Providers in DD world will bend over backwards to provide services…. Even to the point of going under.
You need to contact your legislators and educate them!
Be directly in contact with Governor and his office.
Make your voices heard…. Reach out to your regional representative.
Elly Rufer:
Our Marching orders: Keep advocating.
Family members- We are here as advocates
We have to explain again and again and again….[audience joins in]
They do not understand,
Laura Kennedy–
It is important that we do not lose our collective voice as families.
40 years ago families closed Willowbrook and built this system.
We must be together on this, we should not fight each other.
We cannot permit ourselves to be taken apart.
The system those pioneers fought for.
We must hold their feet to the fire.
Family Member
We should file a Class Action suit!
Pete Pierri
We have a responsibility.
We have to take some time to talk some more about where we go from here with your concerns. We need to think a little more about how we systematically hear your concerns, get them sent to the right people.
Steve Freeman
We need to look at who has been effective at getting what they want.
There is power in numbers…
We need to get people together….
Jim Karpe- Wrap up
I’m Jim Karpe, proud father of two teenagers with developmental disabilities, and a member of NYC FAIR. As we bring the evening to a close, want to first thank all the concerned parents and self-advocates who are here tonight in person and on the phone. When we show up, when we stand together, we are a force to be reckoned with. Many of you are long-time advocates: Thank you for all that you do. Some of you are new to this, and we welcome you.
To the panel members, on behalf of NYC Fair and the New York City Families who are here tonight: Our thanks to you as well. We appreciate your efforts to bring change to the system, coming here to share your perspective and to listen to our concerns.
There is more to talk about, and we hope the conversation will continue, through email, phone calls, and a robust public debate. In closing, we cannot do better than to invoke the memory of the “Father of the ADA”, Justin Dart. He continually pushed for changes and working together with many others, he achieved them. His words provide guidance for the families and self-advocates in the room—and also for the members of the Transformation Panel:
Absolutely don’t wait for anyone. You don’t need a title or an invitation…. You can be a revolution of one today. Speak out. Reach out. … Unity is power. Let us overwhelm fear and fallacy with our vision ….
Thank you.