- Announcements
Save the Date
Manhattan Developmental Disabilities Legislative Breakfast
Friday, March 3, 2017
8:00-10:00 a.m.
Barnes & Noble Union Square, 33 East 17th Street
Family Support Services Committee
Tuesday, February 14, 2017, 10:00 am – noon
Sinergia, 2082 Lexington Avenue, 4th floor
Information: Yesenia Estrella (212) 643-2840 x 349; yestrella@sinergiany.org
Transition Committee
Wednesday, February 8, 2017, 9:30 am – noon
AHRC, 83 Maiden Lane, 11th floor
Information: Kathy Kelly (212) 780-2724; Kathy.kelly@ahrcnyc.org
Legislative Committee
Next meeting to be announced
Information: Jim Malley (212) 928-5810 x 101; jmalley@esperanzacenter.net
Childrens/Education Committee
Next meeting to be announced
Information: Christina Muccioli (212) 780-2532; Christina.muccioli@ahrcnyc.org
Manhattan Developmental Disabilities Council & Manhattan FSS Advisory Council
Thursday, February 16, 2017, 9:30 am – noon
Topic: Proposed NYS Budget
IAC, 150 West 30th Street, 15th floor
Information: Marco Damiani (212) 947-5770 x 456; manhattanddcouncilchair@gmail.com or Margaret Puddington (212) 799-2042; Margaret.puddington@gmail.com
Future Meetings of the Manhattan FSS Advisory Council
See February meeting just above.
No March meeting. Instead, please attend the Legislative Breakfast (box above)
Next meeting: Thursday, April 6, 2017, 10:00 am – noon
Topic: START Program, presented by Dr. Ros Burton and Sharon Cyrus
SUS, 305 Seventh Avenue, 11th floor
Information: Margaret Puddington(212) 799-2042; Margaret.puddington@gmail.com
Margaret reported that Partners Health Plan has offered to come a do a Q&A for us about their managed care plan for adults with DD with both Medicaid and Medicare. We had Lynn Decker do a presentation last year. Members present felt another presentation at this time is not needed.
- Report on Statewide Family Support Services Committee Meeting – Margaret Puddington
The committee met November 30 and covered a wide range of topics:
- Regional Stakeholder Advisory Groups: $10 million had been set aside in the last NYS budget for residential services for people living at home (but not those in crisis, whose needs are addressed elsewhere). Of that amount NYC got $2.8 million. Stakeholder groups in each region convened to decide on the priorities for spending this money. NYC decided: 50% for uncertified opportunities; 40% for certified; 10% for a transition home. Transition homes would be temporary residences, for up to 18 months, that could take someone from an IRA who could learn to live more independently in a different setting, teach him/her independence skills so that the person could move out, thereby vacating the certified opportunity for someone living at home. Or the transition home could take a person from home who needs assessment as to what type of living situation would be best. An RFP is out, due back mid-December, for review by OPWDD staff. Megan O’Conner, Deputy Commissioner, Department of Quality Improvement, will inquire whether families have a role in reviewing the proposals. [At a subsequent DD Council meeting we were told no.]
- A subcommittee of the FSS Committee is participating in updating the FSS Informational Booklet and the FSS Documentation/Guidance, regarding oversight of FSS programs and the FSSACs role in oversight.
- Abiba Kindo, Associate Deputy Commissioner, Regional Office, explained the resources available to families/individuals aging out of school: info on OPWDD web, OPWDD transition coordinators.
- Respite update by Kate Marlay, Deputy Director, Division of Person-Centered Supports: Historical rates were adjusted to a new methodology. Historical rates varied wildly. The new rates are not sufficient for a number of providers. Recently, OPWDD and the Department of Health (DOH), which sets rates, surveyed the types of respite and costs of each type. They have proposed using 6 categories of respite with a regional fee for each. They are hoping for federal approval. The categories are:
o Camp (expensive category)
o In-home respite – lower cost but 1:1
o High-needs respite (high behavior or medical needs), based on needs of the individuals and training of staff, including RN supervision or special behavior management training
o School-age respite – afterschool
o Site-based – Free Standing Respite and other overnight respites
o Recreation – the rate could include transportation costs
- Conflict-Free Case Management – Kate Marlay. Federal Centers for Medicare and Medicaid (CMS) adopted a rule that the same agency can’t deliver both MSC and actual waiver services to same person. So if you get respite from agency X, then you cannot also get MSC from agency X. This rule affects 80,000 people, of whom 50% receive both types of service from the same agency. OPWDD was required to do a transition plan for CMS to show how they will meet this regulation. The OPWDD transition plan stated they are considering regional Care Coordination Organizations (CCOs) that would employ care coordinators. The CCOs would be selected in a competitive procurement process. OPWDD will strive to minimize disruption of services.
o CCOs will offer the opportunity for quality outcome measures and more robust breadth, covering not just developmental disabilities services but also mental health and health care.
o There will be a career ladder to stem turnover, possibly with tiers according to service needs (low to high), and a mentorship program for care coordinators.
o CCOs would have to be developmental disabilities organizations or connected within the developmental disabilities system. The CCOs will be part of the new managed care system we are moving toward.
o To be phased in over several years; implementation begins late 2017/early 2018.
- Kate presented on this subject at the DD Council last week. She mentioned that IT will be a big part of this. How IT will be paid for is unclear. Council members urged OPWDD to start informing MSCs and families who are very apprehensive.
- OPWDD website. The committee discussed the need to make family support services information clearer on OPWDD website. Concrete suggestions were given.
- Speaker: Connie Senior, YAI, on Sexuality Issues Affecting People with Developmental Disabilities Connie Senior handouts, Connie Senior Resource Guide
Connie has been a sex educator for 16 years. She discussed with the group where children learn about sex—TV, internet, school, peers, and parents. Nowadays, children can see everything through the media. She emphasized that parents should be their children’s first sex educator. Children don’t always get good information from other sources. The parent’s voice is primary, so parents should be careful what they teach. Connie then asked what messages about sex people got growing up. Most people reported negative messages.
Connie explained that people with developmental disabilities are sexual beings like everyone else. Cognitive ability doesn’t alter that. Everyone has the need to love and be loved and to be touched. Sex is just a small part of sexuality. Some people want a close relationship but don’t want the sex part. They aren’t ready for that yet.
Connie discussed that sexuality involves: values, communication, self-image, gender identification, socialization, physical expression, body image, and personality. It has sociological, psychological, and biological/physical aspects. Everyone goes through puberty, including people with developmental disabilities. Many people with developmental disabilities need to be taught relevant skills—e.g., how to make friends, not to stare, etc.
Connie also pointed out the harmful effects of repression of sexual expression: emotional instability, anger, sex-related physical problems, physical discomfort, poor self-esteem, feelings of loneliness, poor impulse control, and others.
Connie referred to the Circles Curriculum developed by Leslie Walker-Hirsch, which teaches whom it ok to touch, and the Ring of Safety by Dave Hingsburger about keeping love in and abuse out. She emphasized how important it is to teach children how to say No so they can safeguard their personal rights.
When educating your child, start where the child is. Ask: what does the word “sex” mean to you. Don’t give too much information to young children.
Connie explained that sex education is important because it decreases the likelihood of abuse, combats misinformation, promotes social skills, reduces fear, increases self-awareness and gender comfort, and allows for maturity and healthy relationships.
Please see the attached powerpoint for more information.:
DDROSexuality Education-Parents (1).p