I. Introductions were completed.
II. Minutes were approved; if you were unable to open them, they are available as always on the DD Council website (www.manhattanddcouncil.org).
III. Announcements: Flyers Distributed at Meeting
UCP of New York City
Family Connect vacancy list is attached, as well as information for overnight respite and family reimbursement.
Other
There are no updates on the DOH Consensus panel regarding EI Clinical practice guidelines. There might be more favorable treatment for floor time.
START was launched in the Hudson Valley at the end of October. This should help unhelpful psychiatric interventions for people with IDD and behavioral issues. The survey is not ready to go out yet.
YAI
Free Education Workshops through January; details are attached.
Phone-in parent and caregiver support groups available starting in October on a variety of topics. Contact Kate Macaluso at 212-273-6242, or kate.macaluso@yai.org to learn more.
Free open workshops every Wednesday on navigating the system for people with developmental disabilities. Drop in at 460 West 34th Street, 11th floor. Call 212-273-6182, or link@yai.org for referrals and any other information.
Resources for Children With Special Needs
Intensive Education Advocacy for children who are OPWDD eligible, ages 3-26. Staff will help with understanding the whole IEP process, going to meetings, etc. See attached for details, and for information regarding the Resource Line.
NYC FAIR
NYC Family and Information Resources Network – met on November 5 and had a great turn out, with networking by borough after the meeting. All materials are on the website:
www.nycfamilyadvocacyinformationresource.org. If you would like to be a family mentor or mentee, contact Elly Rufer at nycfair@gmail.com.
AHRC NYC
Program vacancy list is attached.
Archcare at Terence Cardinal Cooke Health Care Center
See attached for openings in the Developmental Disabilities Clinic and information about the Special Needs program at ArchCare Senior Life.
District 75
“Mobility Management Project” – will be on the website in the Spring of 2015, involving a discussion of what are all the options for transportation in a community – church van, Uber cars, Access A Ride, etc. How do we manage resources to get people around freely and safely with the least amount of money? For more information or to offer suggestions, contact Peggy Groce at MGroce@schools.nyc.gov.
“Taking Flight” is the story of a young woman who had never been alone in the community or her apartment, and is now travel trained and very independent. It can be seen on the D75 website, or on the Council’s Facebook page.
Self Advocacy
See attached for on-line training videos accessible to download.
**As always – any agency announcements or non-fundraising events can be sent to manhattanddcouncil@yahoo.com to be included on the Council Facebook page (anyone) or Council website (dues paying members).
Presentation: History and Purpose of the DD Councils by Jim Malley
The Councils were born during the Lindsay administration, a time of Little City Halls and Community Boards. As a counterpart to the Community Services Board, an advisory body consisting entirely of appointed individuals, a fellow who had previously worked in Connecticut brought the concept of grass-roots advisory body to the City Department of Mental Hygiene, headed by Dr. June Christmas. Some people in our area of mental retardation (aka intellectual disabilities), liking the idea but feeling left out, lobbied for a separate department; they wanted to be included in the advisory bodies but not be subsumed by them. Following an old-fashioned sit-in at the City Department of Mental Hygiene, both the Office of Mental Health and the Office of Mental Retardation were formed within the Department. Each Office had its own advisory body and these were designed from the bottom up: each borough was divvied up into regions—Manhattan had three—and each region was represented by a council made up of a 50-50 mix of providers and consumers. There were borough councils (made up of the regional councils) and citywide councils (made up of the borough councils), and whenever the citywide councils of both mental health services and mental retardation got together, they formed the grand-daddy of them all: Federation. The borough chairs still meet quarterly as part of Federation.
When first formed, each borough drew up a set of by-laws based on the template of the ones being used by the mental health people, and within each borough a number of regions formed and had similar but individualized by-laws. The first chair of upper Manhattan Region III was Geneva Bridges. The big difference between ourselves and our mental health counterparts was over the definitions of providers and consumers: in both MH and MR providers were those whose family incomes consisted of at least 10% from the provision of services; for MH the consumer was anyone receiving services; MR included family members. The individual boroughs’ by-laws haven’t changed much over the years, so there’s a lot of hints of their origins. Manhattan’s first chair was Dr. Betty Simons. Under Ed Koch, the City department expanded to include the Office of Alcoholism and Substance Abuse. Their structure was to be the same, but they never fully achieved it.
The councils were extremely vibrant for their first ten years. Since they embodied the concept of regional representation, that format was used in developing the IAC structure out of which the majority of board members were and are borough or county representatives.
Changes in the City’s focus came about in the early 1970s as the State took over a commanding position in the delivery of services after the Willowbrook response. OMRDD was formed, and advocacy grew. Like the City, the State needed an advisory body, and councils were ready-made and seamlessly adopted. The councils became unofficial advisory bodies.
In the 1970s the State and the few voluntary providers were tapped to get people out of Willowbrook. Deinstitutionalization was a joint effort with the voluntaries. The provider coalition grew and eventually became IAC in 1978. IAC was looking for geographical equity: two representatives from each borough and an equal number of elected people. IAC is a provider agency. The councils are made up of providers, families, individuals, and government coming together. IAC and council priorities often agree, and if not, get resolved. Currently, IAC has quarterly meetings with representatives from the borough councils regarding legislative issues.
The City played a major funding role in de-institutionalization. As the State grew stronger, the City gave up some of its responsibilities. At its peak the city had roughly $30 million in DD services. Now city tax levy is down to $3 million.
Borough councils do not exist elsewhere in the State. The role of the councils with OPWDD has fluctuated. For example, councils used to review every proposal, but no longer.
In discussion after Jim’s presentation, it was suggested that now that OPWDD itself has been cut so deeply, it is up to the councils to tell OPWDD what is needed. Jim suggested that the next City Plan include a recommendation to the City to lobby OPWDD for a formal advisory role for the councils.
In related discussion, council members made the following formal requests to the attending OPWDD representative. OPWDD is asked to:
1. Provide to the public the minutes and a list of members of the OPWDD Advisory Council and the statewide Family Support Committee
2. Disclose to the Council the number of people with developmental disabilities who are languishing in hospitals
3. Disclose to the Council the number of people with developmental disabilities currently residing in nursing homes
4. Disclose to the Council the number of Priority 1 people: statewide, citywide, and in Manhattan
IV. State News
Liz Cambra reported on the re-launch of the Front Door. Trainings have been held for MSCs on the new Front Door policies and procedures. On-going trainings for MSCs will be provided. Changes have been made to the Front Door to expedite access to services. For people currently receiving a waiver service who are seeking a change or an additional service, the service coordinator or PCSS may submit a Front Door Service Amendment, which replaces the former required justification. Additionally, now a person may enroll in the waiver even if the provider or start date have not been identified, but the person must get a waiver service within a year. See the powerpoint at fdoor_provider_updates_oct_14_full.pdf.
Regarding the Nurse Practice Act, which would permit AMAP-certified staff to administer medications and some other treatments in uncertified sites, is still being negotiated by OPWDD and the State Education Department. Billing codes have been changed to identify people with developmental disabilities. A form will be sent to people receiving MSC, PCSS, and ICF services.
OPWDD held its 5.07 hearing October 27. The main concerns were: (1) Need for 24-hour residential services; (2) Problems with self-direction; (3) Fears about managed care as unknown territory.
Agencies are being asked to self-assess their own compliance with the HCBS settings rule. Next year, the OPWDD Department of Quality Improvement will make visits.
V. City News
The first round of award letters for one-shot funding has been sent to current providers of city-funded services. A second round will be sent to those agencies with minor deficiencies. A DOHMH Request for Proposals will be released in Spring.
VI. IAC/Federation
Richard Bosch reported that the 4410 nonpublic preschools are in crisis. The Guild for Exceptional Children (GEC) is closing its preschool, in part because there has been no trend in 6 years, which has resulted in a huge loss this year. Because of a handful of unfavorable audits of SEIT providers, all preschool providers have been tarnished and NYS is not willing to provide an increase. A Request for Provider is out and State Education Department (SED) will negotiate with a new provider, but not with GEC, which gets a very low rate. The Regents have been alerted to the situation. SED is conducting rate advisory task force meetings now. State Education Department covers only 95% of the actual costs. There is a GEC petition to address the situation at change.org (write in “Guild preschool”).
IAC is addressing the issue of where the funds for managed care infrastructure will come from. No one has identified a source. IAC’s concern is that this funding must not be taken from funding for direct services.
There have been six OPWDD workshops on ICF transition. IAC is addressing the issue that there are 6,300 people aged 60+, but there does not appear to be any planning or funding for people whose needs will increase as they age.
VII. Committee Reports
Family Support Services: There is currently much activity for planning for the December 18 Fair. Raffles will be drawn at the plenary session and also in each workshop. Brochures were distributed at the meeting and agencies were asked to circulate them widely. Contemporary Guidance Services volunteered to prepare the packets. Next meeting: Tuesday, December 9, 10:00 am – noon, YAI, 460 West 34th Street, 11th floor. For information, contact Amy Bittinger (718) 859-5420 x 234; abittinger@ucpnyc.org.
Legislative: The annual Legislative Breakfast will be held March 13, 2015, 8:00-10:00 am. Family Advocacy Day will be February 27, 2015, 10:00 am – 2:00 pm. The Developmental Disabilities Advocacy Survey has over 2,000 responses. Top priorities continue to be the need for 24-hour residential development and the need for a sufficient managed care rate. Six parents from around NYS had a phone conference with Acting Commissioner Kerry Delaney at which we presented the survey findings and urged her to include funding for 24-hour residential services in the OPWDD budget request. She indicated her strong preference for flexible funding, rather than a discrete budget line, so we requested that the budget language explicitly state that funding will be available for 24-hour residential services. The survey will remain alive to continue collecting data that will be presented to legislators as advocacy proceeds. Next meeting: to be announced. To join the committee or for more information, contact: Jim Malley (212) 928-5810 x 101; jmalley@esperanzacenter.net.
Transition: At the November meeting, AHRC presented on college options. AHRC is expanding this service under day hab without walls. Next meeting: Wednesday, December 10, 2014, 9:30 am-noon, AHRC, 83 Maiden Lane, 11th floor board room. Information: Kathy Kelly (212) 780-2724; Kathy.kelly@ahrcnyc.org.
Service Coordination: At the last meeting, Irina Tuchina and Ellen Millman, FEGS, presented a wealth of information on trusts. Next meeting: Friday, November 21, 10:00 am – noon, UCP/NYC, 80 Maiden Lane, 2nd floor training room. Linda
Schellenberg will present on self-direction. Information: Carol Lincoln (718) 859-5420 x 225; clincoln@ucpnyc.org.
Manhattan Family Support Services Advisory Council: At the last meeting, Bobra Fyne, YAI, gave an informative and engrossing presentation on sex education for people with developmental disabilities. Next meeting: Wednesday, December 3, 2014, 10:00 am – noon, Resources for Children with Special Needs, 116 East 16th Street, 5th floor. The topic will be how to help people with developmental disabilities cope with loss. Information: Margaret Puddington 212-799-2042; Margaret.puddington@gmail.com.
Children’s Committee: No report. Information: Christina Muccioli (212) 780-2532; Christina.muccioli@ahrcnyc.org.
Family Engagement and Outreach Committee: At its first meeting this new committee shared ideas for increasing ongoing council participation. Lynn Decker, parent/broker, agreed to co-chair this committee with Marilyn Rubinstein, Early Childhood Direction Center. Next meeting: immediately following the December DD Council meeting. Information: Lynn Decker 917-575-5166; lynn_decker@me.com.
Next meeting: Thursday, December 11, 2014, 9:30 am, YAI, 460 West 34th Street, 11th floor.