Category Archives: Advocacy

NYC FAIR: Advocacy News 7/27/15

Advocacy, Bronx, Brooklyn, Manhattan, Queens, Staten Island, Transformation Agenda & Panel Meeting: May 19th, 2015

Click here for a .pdf version of the Advocacy News below

All the Summer Advocacy News AND Recaps of Recent Events

Good Morning All,

Although summer is a time for lazy, hazy days of relaxing, sun and fun, we at NYC FAIR have been keeping up the HEAT these past couple months meeting with people who have a strong history with OPWDD and knowledge base that is helping us formulate a multi-pronged advocacy plan which will make us effective advocates in the coming months.

There is no vacation from advocacy and we are committed to keeping up to date on all changes and happenings in the OPWDD world so we can gear up for our Fall Advocacy efforts. That’s where you all come in. We will need all self- advocates, parents and family members to make their voice be heard. We’ll be calling on you shortly.

Included in this email: an update on scheduling of “listening sessions” for the Transformation Panel, a recap of the Town Hall meeting on Staten Island with Acting Commissioner Delaney, a review of pending Legislative Issues, a recap of the May 19th “Meet the Transformation Panel” meeting and details of the June 2nd “Knowledge is Power” meeting. Coming in August: Action Opportunities: for Everyone.

Summer News:

From Peter Pierri, Executive President of IAC on July 22nd:
“Latest word is OPWDD’s “listening sessions” are being planned for September. Scheduling logistics got in the way of them happening earlier. The Panel’s work schedule has also been extended time-wise, so these session will definitely occur prior to the Panel’s formation of specific recommendations.”  Confirmed in OPWDD’s “People First News Summer 2015 See page 8 

Town Hall Meeting on Staten Island:
On July 13th, 2015 SIDD Council hosted a “Town Hall” meeting with OPWDD Acting Commissioner Kerry Delaney. The conference room at IBR (NYS Institute for Basic Research) was standing room only ( 220+ people) for an hour-long lunch time meeting in the middle of the summer. Families and self-advocates came from all boroughs for this unique opportunity. Pointed questions regarding the transformation agenda, the future of OPWDD and the lack of residential development and a clear plan to address this growing need were asked.

Assemblyman Michael Cusick and other local representatives attended  as well as reps from the City Comptroller’s and the Governors office were present. Because many questions and concerns remain, the acting-Commissioner agreed to attend another Town Hall meeting in the evening in September (TBA).

Residential Wait List:
Important Notice –  Remember the New York State Cares Wait List?  OPWDD will be updating this Residential List by calling all families who have a person on the list, survey their current residential situation, and identify future needs. There are over 11,000 people who will be called. OPWDD will be using trained staff from the Office of Children and Family Services for this effort. Prior to the calls taking place, you should expect a letter in the mail giving you an overview of this endeavor. If you are called, we strongly encourage you to participate in the survey. It will help provide our governor with real numbers in terms of need. In this years state budget, the legislature has mandated OPWDD to provide a report of its statewide review of individuals with Developmental Disabilities who are currently on its residential waiting list. This report must include an update on its transformational housing goals and develop a plan in consultation with families, individuals with DD and other stakeholders to increase housing alternatives for individuals with DD, including those not currently on the residential list. The phone calls will begin in August and continue through to September. The report to the legislature must be released by February 15, 2016.

Legislative Update as of July 13:
These bills will be sent to the Governor – to sign or veto:

  • Legislation passed both houses ensuring that long term care under managed care are non-profits.
  • A bill that enables families that set up accounts with ID/DD (the ABLE Act) will not interfere with eligibility for Medicaid or Social Security
  • A bill allowing school psychologists to continue to perform evaluations on prospective pre-school children.
  • A bill to restore the cut to the Article 16 clinics . Article 16 clinics provide medical and speciality services (ie: Physical Therapy, Occupational Therapy, Podiatry and more).

Issues before the Assembly and Senate:
Guardianship changes – different types of limited guardianship including time limited (e.g. for a month), single issue (e.g. buying a house) or a single area (e.g. financial or healthcare decisions)
Guardians will have to report yearly to OPWDD. The process for an uncontested guardianship (for people with ID/DD) would be streamlined to eliminate the need for physicians certifications, MHLS (Mental Hygiene Legal Services) would make that determination.  This bill is being looked at by many stakeholder groups to make sure it satisfies a variety of situations.
Minimum wage for DSP’s: On July 22nd, 2015 the Fast Food Wage Board approved resolutions to incrementally increase the minimum wage for fast food workers to $15.per hour.  Many social service organizations including agencies that work with people with ID/DD are concerned about the effect on the work force in our field. A bill was introduced that would require that the State provide funds to providers to increase salaries of the DSPS. Click here for more clarification and details from NYSARC

Recap of NYC FAIR’s  May and June Meetings:

Meet the Transformation Panel:
On May 19, 2015 NYC FAIR hosted a meeting at IAC  with members of the Transformation Panel.  Panelist present  were Michael Seerighter, NYSRA, Susan Constantino, CP of NY State, Peter Pierri, Exec. Director of IAC, Steve Freeman, Freeman and Abelson Consulting, Neil Mitchell, Exec. Assist. to Kerry Delaney. 

Members of the NYC FAIR’s Executive Committee introduced themselves and opened the meeting. They presented a paper of remarks and comments that had been created about the current work of the Panel touching on the subjects they had addressed to date: Employment, Residential, Day Habilitation, Self Direction, and the Front Door among other things

The Panel Members responded to the comments and then the floor was opened to questions from the attendees.

The remarks and meeting minutes can be seen here. May 19th, 2015 Meet the Transformation Panel Meeting

In conclusion the Panel Members promised that they would bring back to the whole committee what they had heard and recommend that the listening sessions with family members around the state would take place BEFORE recommendations were made in order to be sure to include input from Family Members about their plans. They also suggested that they would welcome any other input.
Read more about the Transformation Panel.

Click here to read and or write an email today: OPWDD Transformation Panel

Knowledge IS Power:
NYC FAIR hosted a meeting for parents with children in the Education System at Sinergia on June 2nd, 2015.

Spanish translation was available.

Paolo Jordan, Lori Podvesker, and Melanie Rivera who are all parents with young children in the “system” spoke about their experiences with the Department of Education fighting to get their children the right education. In addition they presented material about recreation, respite, and other family support services. Afterwards they met individuals with specific questions and made recommendations to them about a way forward.

Coming in August:  What Keeps Me Up at Night?
What our families need to survive. Ways to to tell our stories and get them to the people who can help us.

Summer 2015 People First News (From OPWDD 7/23/15)

Advocacy, opwdd

The Summer 2015 edition of the People First News is now available.

Entire Summer News Here: Summer_2015_PFN_0

SEE PAGE 8 BELOW FOR UPDATE ON TRANSFORMATION PANEL:

Transforming Together

“A Transformation Panel was called together by the Acting Commissioner in early March 2015 to discuss several issues faced by New York’s system of supports for people with disabilities. The group, which includes individuals, family members, advocates, provider association leaders and agency executives, has addressed the need for more modern and sustainable models of care and is exploring paths that will lead to real opportunities for people with disabilities, always mindful of those with higher levels of need. As the system evolves, the goal is to help people transition from workshops to work, from institutional settings to community settings, and from exclusion to acceptance – all the while providing them with the services and supports they want and need.

In a brief period, the panel has met nine times and engaged on a variety of issues—including selfdirection, housing, employment and managed care. They are scheduled to meet a few more times to examine challenges around the issues of managed care and long-term sustainability. The panel is asked to provide clear and achievable recommendations to guide our path forward. To ensure that everyone has the opportunity to participate in this discussion, the panel will host forums statewide in September to encourage meaningful dialogue, discussion and input.

The panel will review the public recommendations gathered at the forums, through email and other feedback, and make final recommendations by November.

This is an important step in planning for the future of supports and services and we hope that you will take part in the process.”

 

 

 

 

 

 

 

 

 

 

 

Summary Of Meet The Transformation Panel Meeting held May 19th, 2015

Advocacy, Transformation Agenda & Panel Meeting: May 19th, 2015

NYC FAIR invited members of the Transformation Panel to come and hear from concerned parents/guardians and other family members about the work of the Panel in implementing the Transformation Agenda. The event took place at the headquarters of the Inter Agency Council, 150 W. 30th Street

Present: from the Panel: Pete Pierri, Executive Director of the IAC, Stephen Freeman of Freeman & Abelson, former head of YAI, Susan Constantino of CP NYS, Michael Seerighter of NYSRA, and Neil Mitchell, Asst. to Acting Commissioner Kerry Delaney.

In the audience were members of NYC FAIR and other concerned citizens representing all the boroughs, Westchester GROW and LI Alliance

Elly Rufer introduced the panel and set out the parameters of the evening. Meri Krassner read a statement compiled of questions and concerns that had come up in meetings about the Transformation Agenda and questions submitted online by attendees. It is posted on the website.

The Panel responded, most agreeing that the Agenda does not take into consideration the needs of those who are most affected, and most vulnerable.Most of the recommendations reflect the abilities of the highest functioning members of the community. It was stated repeatedly that they understand this and agree with this perception and were willing to go back to the whole panel and make this point.

The Panel took questions from the audience and promised to answer any questions that were submitted hereafter. It was clear that there was a lot of trepidation, fear and distrust among the attendees. Pete Pierri made the point that in the absence of communication from OPWDD people will make up their owns stories and that it is imperative that OPWDD introduce transparency and make a better effort at communication.

Jim Karpe summed up and the meeting was adjourned.

A transcription of the meeting is available online along with the questions submitted to the Panel members.

 

An Open Letter to the Transformation Panel and Commissioner Delaney

Advocacy, Transformation Agenda & Panel Meeting: May 19th, 2015

Five of the members of OPWDD’S Transformation Panel came to a meeting on May 19th in NYC, to listen to our concerns and tell us their reactions.

Dear Transformation Panel –

First, thank you for coming to speak and to listen. We appreciate your initiative and your acknowledgement of parents/guardians/family members point of view. As became clear during the meetings, we are passionate about caring for our loved ones, and we are very worried about what the future holds.

Hearing the members of the panel express their sympathy for, and understanding of, our diverse population was heartening but we remain concerned. As Susan Constantino put it “Every time we meet, we bring up the most vulnerable. Their situation touches my heart.” The panelists who spoke up all agreed: OPWDD needs to create and maintain a wide range of options for both housing and day programs.

Our concern comes from the disconnect between the Panel’s attitudes and OPWDD’s actions. The system right now appears to say:

 One size fits all – the size of the most capable. We will provide funding only for houses that hold four or less, and everyone belongs in competitive employment programs. The rest of you can have under-staffed day-hab-without walls.

Our families, the ever-aging care-givers of the most vulnerable, are already feeling the impact of the recent changes, and fearing the impact of the changes to come. We had dozens of questions – but really only one message for OPWDD: “This does not work. How dare you?!”

Sincerely,

Jim Karpe, Elly Rufer, and Meri Krassner,

for the Executive Committee of NYC FAIR

NEXT STEPS

FOR THE PANEL MEMBERS. We understand that the Panel does not dictate to OPWDD. But we challenge you – do not let OPWDD dictate to you.

Please keep in mind the underlying assumptions behind the suggested policies, the level of capability assumed, and remain mindful of the full range of complex human need in this community.

For the families and self-advocates. We cannot do better than to quote Panel member Peter Pierri: “Advocate. Don’t stop til you get what you want.”

ATTACHMENTS

The PDFs below contain our minutes of the May 19th session, and the questions submitted by families from around the greater NYC Metropolitan area, including Westchester and Long Island.

Read the entire Minutes here: 5.19 minutes with wrap-up FINAL

Read Questions Submitted at the Meeting & Forwarded to Acting Commissioner Delaney and the Transformation Panel:? from audience 5.19.2015

 

MAY 19, 2015 NYC FAIR MEETING MINUTES: “MEET THE TRANSFORMATION PANEL”

Advocacy, Transformation Agenda & Panel Meeting: May 19th, 2015

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.