1. Announcements
Manhattan Family & Professional Resource Fair
Thursday, December 18, 2014, 9:30 am – 2:00 pm
Hotel Penn, 401 Seventh Ave. at 33rd Street, 18th floor
Info on services and supports from over 90 service providers.
Family Support Services Committee
Tuesday, November 11, 2014, 10:00 am – noon
YAI, 460 West 34th Street, 11th floor
Information: Amy Bittinger (718) 859-5420 x 234; Abittinger@ucpnyc.org
Transition Committee
Wednesday, November 12, 2014, 9:30am – noon
AHRC, 83 Maiden Lane, 11th floor Board Room
Information: Kathy Kelly (212) 780-2724; Kathy.kelly@ahrcnyc.org
Legislative Committee
To Be Announced
Information: Jim Malley (212) 928-5810 x 101; Jmalley@esperanzacenter.net
Children’s Committee
Monday, November 3, 2014, 9:00 refreshments; 9:30-noon meeting
Jewish Guild for the Blind, 15 West 65th Street
Information: Christina Muccioli (212) 780-2532; Christina.muccioli@ahrcnyc.org
Service Coordination Committee
Topic: Special Needs Trusts
Friday, November 21, 2014, 10:00 am – noon
UCP/NYC, 80 Maiden Lane, 2nd floor training room
Information: Carol Lincoln (718) 859-5420 x 225; Clincoln@ucpnyc.org
DD Council
Thursday, November 13, 2014, 9:30 am
AHRC, 83 Maiden Lane, 11th floor conference room
Information: Marco Damiani (212) 273-6188; Marco.damiani@yai.org
2. Update on Statewide Family Support Services Committee
The Statewide Family Support Services Committee met with the Acting OPWDD Commissioner, Kerry Delaney, in September. The new Associate Commissioner, Abiba Kindo, was introduced. The Acting Commissioner discussed the recoupment issue: After auditing OPWDD, the CMS (Centers for Medicare and Medicaid) wants to recoup $1.25 billion, which it claims was an overpayment to OPWDD in 2010-2011, despite the fact that the billing methodology used by OPWDD at that time was approved many times by CMS itself. CMS wants to audit 2 additional years. The total recoupment could amount to $4 billion. NYS is appealing the decision, which could be a very lengthy process. In the meantime OPWDD is urging CMS not to audit the additional two years until the first decision is resolved. [The provider associations have gotten all NYS legislators but one to sign on to a petition that would delay additional audits until the present one is resolved.]
Consolidated Supports and Services (CSS) has been redesigned and is now called Self-Directed Services. The committee had a presentation on Individual-Directed Goods and Services (IDGS), a new waiver service that is part of self-directed services in cases where people control their own individual budgets. IDGS enables people to purchase something at a rate of pay set by CMS. Examples of things that IDGS can purchase: membership in a health club, a class, camp, play therapy, music therapy, transportation expenses, household living expenses. Each of these is capped. IDGS will pay for things that the Medicaid waiver will not pay for. The new rates for Self-Directed Services and IDGS differ in some cases from what CSS was allowing, which will cause problems for some families.
In June the committee members brought to the then-Acting Commissioner’s attention certain problems regarding access to family support services (FSS) under the new Front Door procedures. It used to be that each region got funding for a Request for Proposals for new FSS services; from now on, there will be no more statewide Requests for Proposals. Instead, each person goes individually to the Front Door looking for services. That brings up certain problems, which the committee is attempting to get resolved. Problems include: identifying and addressing gaps in services; collaboration between Councils and Front Door; mechanism for expanding FSS waiver and nonwaiver services; mechanisms for reallocating funds from waiver and nonwaiver FSS programs that are not meeting local needs; the role of the councils regarding identifying gaps in FSS services, in reallocating funds from cancelled FSS services, and in monitoring current FSS services. A few issues have been resolved, but written guidance to OPWDD’s FSS coordinators has not yet been disseminated. We will continue to work on these issues at the Quarterly meetings and through phone conferences in between meetings.
3. Update on Developmental Disabilities Advocacy Survey
The Family Forums, held last month in some regions, including Manhattan, were a first attempt to get family and self-advocate input on advocacy priorities. Following the Family Forums, we extended our outreach to families/self-advocates by doing an online survey to rank advocacy priorities in two areas: unmet service needs and concerns about managed care. As of October 24, 1,415 surveys were completed. The results show that the number-one priority in unmet service needs is for 24-hour residential services, which had about double the score of the second priority (employment). Regarding concerns about managed care, the number-one priority is the need for adequate funding for the new managed care entities to avoid their denial or limitation of services, especially for high-cost people. The survey data was presented to the Acting Commissioner in a conference call with parents representing 6 diverse regions of NYS. The survey is continuing. We will be able to use the survey data with OPWDD and with legislators, when it’s time to advocate with them. The survey will be re-sent shortly. Please complete it if you have not already done so. And please forward the survey to other families/self-advocates.
4. Speaker: Bobra Fyne, Assistant Coordinator of Sex Education, YAI, on Sexuality Issues
Bobra began by asking attendees how they learned about sex themselves: from peers, parents, media, or other sources. She explained that sex education is important to dispel misunderstandings and decrease anxiety and fear. She emphasized the importance of building personal pride, social skills, and self-confidence with the goal of forming healthy, fulfilling relationships. She also stressed that sexual education helps people learn the responsibilities of being a sexual person, helps them avoid situations where they might be sexually exploited or harmed, helps them avoid unsafe or illegal sexual behavior, and helps them enrich their lives by finding sexual expression that fits their abilities and needs.
Bobra and the group discussed the reasons people have sex—such as physical enjoyment, a desire for intimacy, or peer pressure. And Bobra explained that when people under the care of a provider are interested in sexual activity, they must prove they have enough information to make sound decisions about sex. A sexual consent assessment must be completed: the individual must demonstrate a knowledge of what sex is, the ability to say No, knowledge of what types of sexual behavior are illegal, an understanding of what is public vs. private sexual behavior, an understanding of what circumstances constitute exploitation. If people do not have this knowledge, it is often possible to teach them. The age of consent in New York State is 17.
Bobra explained that parents’ job is to teach morals, values, and ethics, whereas a sex educator’s job is to give information.
Attendees raised questions specific to their own child’s issues, and there was much interaction between Bobra and the group.
Attached: Sign-in sheets, Bobra Fyne handout 14 announcements
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Dear Families and Self-Advocates
Please complete the Developmental Disabilities Advocacy Survey if you have not already done so. Please use the link below to complete the survey.
NUMBERS MATTER! We will use the results of the survey to advocate to our legislators for needed services and supports. Help us reach more families and self-advocates. Please cut and paste the message below and e-mail it to other families and self-advocates.
THANK YOU
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STATEWIDE COALITION OF DEVELOPMENTAL DISABILITIES FAMILY ADVOCACY ORGANIZATIONS c/o Margaret Puddington ■ 562 West End Avenue, 2A, New York, N.Y. 10024 ■ phone 212-799-2042 ■ margaret.puddington@gmail.com
IMPORTANT: Please forward to other family members and self-advocates and to family and self-advocacy groups
Developmental Disabilities Advocacy Survey
Families and self-advocates can help set the advocacy agenda for the coming year by completing this brief Developmental Disabilities Advocacy Survey! Results of the survey will be used to identify the top advocacy priorities across New York State. Families’ and self-advocates’ top priorities will be shared with providers and provider associations and will be front and center of our statewide advocacy campaign to OPWDD and our elected officials to fight for what is needed!
Take 4 minutes to complete this survey today!
Please click on the following link and follow the directions to complete the survey: Developmental Disabilities Advocacy Survey
Thanks for participating!