All posts by elly.rufer@gmail.com

NYC FAIR Executive Committee Comments on “Parents’ lawsuit blames state for shortage of group homes”

Action Alerts, Advocacy, , , , , ,

IMPORTANT, EXCITING STATE-WIDE NEWS:
NYC FAIR Executive Committee Comments on the Buffalo Lawsuit

We have become aware of the recent filing of a lawsuit in Federal court in Buffalo to address the lack of residential options for people with Intellectual and Developmental Disabilities. As advocates, we support the people who have taken this action, and know that they have done so to ensure that their loved one’s health, safety, and quality of life is protected.

In February the New York State Office for People with Developmental Disabilities reported that there are more than more than 11,000 people statewide who need long term housing and will not be able to live independently due to their Developmental Disability. New York State reported that 46% of these people live with a family caregiver who is 60 years old or over; 61% of caregivers are experiencing health issues themselves; and 48% of those at home need assistance with almost all basic activities.

It appears that New York State’s housing strategy for people with Developmental
Disabilities is crisis management; the state responds when the caregiver dies, is unable to, or refuses to care for their loved one. As advocates, we recognize that moving their loved one is one of the most difficult decisions that a family can make, but one that all caregivers will face one day. The best outcomes for our loved ones occur when caregivers are healthy and able to plan for this this move, with the state providing adequate supports and services to meet their needs.

We recognize the substantial need that exists to identify long term housing options for a continuum of people with Intellectual and Developmental Disabilities. It is for that reason there must be a variety of options including intensive support for those with the most complex needs.

It is unfortunate that families are faced with such uncertainty, and we applaud this group of families and their courage in taking this action.

Read the story as reported by the Buffalo News on September 13, 2016:
http://www.buffalonews.com/city-region/federal-court/parents-lawsuit-blames-state-for-shortage-of-group-homes-20160913

More Information : Read the complaint-class-action and memo-of-law-in-support-of-class-certa class action if you want to see all the details.

Social Media with Natalie Belva

Advocacy, Meeting Minutes & Handouts

NYC FAIR’s Social Media Meeting WAS May 24th

Natalie Belva, Digital Media Manager, Marketing and Development, UCP NYC, and a Sibling, was superb!

Here is the link to the presentation
http://prezi.com/skqstqitvms1/?utm_campaign=share&utm_medium=copy&rc=ex0share

Here is the link to the presentation as a NatalieBelva_SocialAdvocacy (1) Power Point

Here is the link to: Important Sites To Follow

We WILL Follow Up with:

Social Media 101: Coming Soon

NYC FAIR Meeting Tuesday March 22, 2016

Meeting Minutes & Handouts, nyc fair, Resources

Presenting : Pete Pierri, Executive Director of IAC (Inter Agency Council)

Michael Seerighter, Executive Director of NYSRA(New York State Rehabilitation Association) and sibling

Reported that NYC FAIR was at the rally held Friday March 11, 2016 and SWAN did upstate in Rochester, Buffalo and Albany

Pete Summarized the budget process – the Governor submits his proposal, and then each of the two houses look at the budget and they decide what they would like to see in the budget. There is a negotiation to hone the final one which is done by April 1.

The two houses weren’t much different. The Assembly did $200 million in it to pay for increases in the minimum wage to cover many agencies beside OPWDD.

The Senate did not put any money in nor did they agree to raise the minimum wage.

IAC’s concern is wanting the minimum wage but to get more for DSPs as they should be paid reflective of the work they do and their importance to our field.

Michael: The minimum wage has galvanized all agencies that supply services to people, there is a lot of common ground. The Human Services Counsel had a press conference just like the one IAC has the week before.

We have seen a general devolution of the status of people who provide supports to other people. We are fighting against that trend. We’ve gotten a lot of media attention. The Governor’s office is very conscious of press attention, they called to say ‘don’t rally’, .The Governor has been going on the offense against providers, not just in the DD field but non-profits across the board talking about Executive Compensation, that the State of NY has never increased funding for the minimum wage. We are trying to refute that.

This is a highly fluid issues that is hard to influence.

The Senate is split by one seat and there is an election April 19 that could flip the entire house. The legislators are all watching out for themselves. Don’t think there will be an agreement til the Senate seat is decided.

The coalition of family groups, SWAN – speaks to the gravity of the situation and the threat it proposes. If the minimum wage passes without funding then there are agencies that will close.

There is a lot of anxiety and stress in families now. Need to heighten the conversation

Best way to communicate is to be in their faces, Federal and State government operates in a crisis mode. We need to present them with a crisis, whether electoral or functional.

 

Pete: one of the disappointing things, despite all the public forums where Residential was the biggest issues, some money but it is the same rate. We want a planned process, not crisis reaction.

That is the ultimate in Person-centered planning. Can’t let the pressure up,

 

People should go to the state with their requests, not be put off because they think they aren’t going to get them. Get yourself there and get documented, if turned down then collectively we can turn this into some action

 

Ellen McHugh: is there a tip sheet to take to the Legislature, a script with 3 or 4 things to leave with them so they can take that back to their leaders

 

Elly: If OPW doesn’t get any money then we need to get on every single panel, Delaney says she’s rolling out committees to make decisions. Lets get new faces on the these panels.

 

The Clinical Advisory Group cannot do it with just clinicians and executives, SWAN is sending a letter to legislators about this.

 

Pete: Go to the Commissioner and ask her for a list of the groups and we will tell you our interest in being on them, find out about all the potential opportunities.

 

Takeaways:

 

Stay in touch with your legislators now and going forward, write, call, show-up. This should not be just in response to the budget, increase the pressure so that they understand that they have a problem

 

Get a list of all the work groups, committees and panels concerning our family members and make sure there are family members on them.

 

Start a social media campaign using Facebook, Twitter, Youtube and Instagram

 

Emphasize that these are needs, not wants – unmet needs

 

Need to create committees to work on the following topics to report back to the group

 

Social Media – using all forms

 

Financial –challenges of the system, funding sources

Policy – the committees and workgroups that make policy

Politics – how the systems function and how they fit in the larger system (CMS)

 

Possible further meetings for parents coming up:

 

How to get through the Front Door,

 

How to get on the Certified Residential Opportunity List