In FSSAC Minutes, Minutes
  1. Announcements

Family Support Services Committee
Tuesday, April 11, 2017, 10:00 am – noon
Adapt Community Network (formerly UCP/NYC), 80 Maiden Lane, 4th floor
Information: Yesenia Estrella (212) 643-2840 x 349;

Transition Committee
Wednesday, April 19, 2017, 9:30 am – noon
AHRC, 83 Maiden Lane, 11th floor Board Room
Information: Kathy Kelly (212) 780-2724;

Legislative Committee
Next meeting to be announced.
Information: Jim Malley (212) 928-5810 x 101;

DD Council
Thursday, May 11, 2017, at 9:30 am – noon
CP of NYS, 330 West 34th Street, 15th floor
Information: Marco Damiani (212) 947-5770 x 456;

Elly Rufer announced the upcoming meeting of the 5-Borough Council, April 19, 10:00 am, 25 Beaver Street and video sites in the other 4 boroughs. All are welcome.


  1. Report on NYS Budget, Medicaid Restructuring, and Advocacy Activities – Margaret Puddington

Because the New York State budget was not passed on time by April 1, the Legislature had to pass a budget extender, to extend the current budget through May 31 by which time the federal budget will have come out. Governor Cuomo wants to know the extent of any federal cuts so that he can accommodate them in the NYS budget. Subsequently, the NYS budget was passed.

The main issue for the I/DD community was to raise the salaries of direct support professionals (DSPs).   About 500 people attended the #bFair2DirectCare rally in Albany March 28 to add $45 million to the NYS budget to raise salaries of DSPs. The Governor addressed the group and promised to implement a 3.25% increase to begin on January 1, 2018, and another 3.25% increase on April 1, 2018. This is in addition to the already enacted minimum wage increases for all lower paid staff.  The Governor said that his proposal would cost $55 million, which is $10 million more than we had asked for.  The additional money would be used to fund similar increases for DSPs working under the auspices of the Office of Mental Health and the Office of Alcoholism and Substance Abuse Services. Subsequently, these increases were included in the enacted NYS budget—a tremendous accomplishment.

To get these raises, the #bFair2DirectCare coalition waged a year-long campaign with rallies, tweets, emails, press conferences, even a billboard in Times Square. Success came because we united around a state-wide coalition, a catchy phrase, multiple events, news stories sustained over more than 12 months, and the tireless efforts of advocates from all over the state.

The other priority issue was pay raises for teachers, teacher assistants, and clinicians in both 4410 preschools and 853 school-age programs. In order to stop the massive teacher turnover, we advocated for funding to increase teacher salaries in both 4410s and 853s. We advocated for $18 million to begin to reduce the huge gap between our teachers’ salaries and salaries of public school teachers. We also advocated for a 4% tuition increase for 4410s and 853s. In the final budget we did not get any money to reduce the gap. But the State Education Department has requested the 4% tuition increases, which will have to be approved by the Governor and the Division of the Budget. Advocacy will continue about this.


Medicaid Restructuring

The first attempt to repeal ObamaCare (ACA) was not successful: the recently proposed American Health Care Act was not brought to a vote and got shelved. However, Medicaid “reform” is certain to be resurrected in one or another guise. Whether through block grants or per capita caps, the overriding goal of Medicaid restructuring is to reduce costs. The recent proposal would have cut Medicaid by $377 billion (not including the loss of state dollars) over 10 years.

Currently Medicaid is a needs-based cost-sharing arrangement between the federal and state governments. But under block grants or per capita caps, each state would get a fixed amount of money and would have discretion over how to spend it.

To compensate for reduced funding, states would be forced to adopt some or all of these strategies: limiting eligibility, limiting or eliminating services and supports, imposing costs on Medicaid recipients, and reducing payments to Medicaid providers.

All Medicaid recipients could be hurt, but people with developmental disabilities (DD) are at extraordinary risk for the following reasons: DD services are lifelong services; there is a very extensive range of services, including residential and day; staffing in DD services is intensive. DD services are distinct because of the unique, and costly, needs of people with DD. Because our services are so costly, we have a target on our back.

DD services are completely reliant on Medicaid funding unlike e.g., hospitals, which only get 40% of their revenue from government. DD providers can’t charge more like McDonalds or expand revenue by using other insurance like hospitals. The only option for DD providers would be to reduce staffing and services, which would put people with DD at risk. We’d have to compete with all the other Medicaid populations for funding. The results are clear: we’d be decimated.

Medicaid cuts are an enormous threat to people with disabilities. Stay tuned for further developments. Please respond to alerts. If we don’t do it, no one will.

Meanwhile Manhattan and other advocates are planning visits to members of Congress to educate them about the dangerous impact of such cuts on people with I/DD.

About 200 people attended the Manhattan Legislative Breakfast March 3. Our main topics were raising salaries for DSPs and the dangers of Medicaid block grants or per capita caps. On DSP wages, speakers were a DSP and Susan Constantino, CEO, CP of NYS; on Medicaid cuts, Marco Damiani, chair of the Manhattan DD Council, gave an overview and 11 speakers—parents and a self-advocate—made the potential impact real. NYS Senator Brad Hoylman also addressed the audience. Manhattan legislators are very sympathetic.



  1. Report on Statewide Family Support Services Committee Meeting, March 29, 2017– Margaret Puddington


Commissioner’s update

Helene de Santo, Acting Executive Deputy, OPWDD, provided an update on the NYS budget, which included wage increases for DSPs (see above) and:

  • $120 million, state and federal shares, annualized, for new development of all types of services – residential, community hab, respite, etc.
  • Multiyear housing strategy (details below)
  • $15 million in capital funding for affordable housing
  • Access to money for supportive housing
  • Language regarding the transition to managed care and access to start-up funding
  • Guarantee that any savings realized by OPWDD will be returned to OPWDD
  • Language establishing Care Coordination Organizations (CCOs) in January 2018 to provide conflict-free case management. DD providers will come together to establish CCOs, bringing their MSCs as employees of the CCO. CCOs will operate under the framework of health homes, a model that satisfies the conflict of interest issue. People with I/DD will be one of the qualifying populations for health homes. A request for applications will be out soon.
  • Crisis funding for START in the downstate region. (See START presentation below.)
  • Funding to meet the new minimum wage


All of these items were included in the enacted budget.


Nurse Practice Act – Susan Prendergast: Traditionally, medications could only be administered by DSPs who were directly supervised by nurses in certified settings such as IRAs or ICFs. This act permits DSPs to administer medications and do other medical tasks in uncertified settings (setting not certified by OPWDD, such as individually leased apartments). This is important because some people could live more independently except that they need assistance with their medications. If staff are not permitted to provide that assistance, the individuals must live in a more restrictive setting such as an IRA. Ten providers have been approved under the Nurse Practice Act, but it is not clear that any providers have implemented it. The process is onerous and requires actual nurse oversight, so that providers must hire a nurse to make visits to the site. This is an unfunded mandate.

FSSACs’ Oversight of Waiver Respite – Tamika Black. Some DDROs have chosen to discontinue their own oversight of waiver respite programs. It is no longer possible to measure how many people are using a particular program or how many hours of service were provided because of Front Door access, where people enroll in a program one at a time. Programs used to be funded through a request for proposal process, where the number of people to be served for a certain number of hours were stipulated. That is no longer true. Additionally, the units of service (hours) are bundled for all of an agency’s waiver respite programs, so that you have a grand total of respite hours for in-home respite, recreation, overnight respite, etc., and cannot tell how many hours an individual program is supposed to provide. Thus, there is no way to measure an agency’s attainment for a particular program. Moreover, OPWDD has transferred oversight responsibility for waiver respite programs to the Division of Quality Improvement (DQI). Some DDROs, such as in NYC, are no longer monitoring waiver respite programs. Our FSS Advisory Councils are objecting to being cut out of our previous oversight roles.


OPWDD had agreed that the FSSACs could go on joint oversight visits with DQI. Joint visits were to be piloted in January, but Tamika Black explained that the pilot was delayed because there is a new audit tool, based on person-centered principles, which is unfamiliar to surveyors, who are not yet comfortable with it. Tamika predicts that by August, they will be ready to pilot the joint visits. The families expressed concern that it has been quite a long time since visits to waiver respites were conducted, which means oversight is lacking, and we emphasized that our councils want to be included (with the exception of one or two who did not previously oversee waiver respite programs).


OPWDD Communications: “Join the Conversation” – Cynthia Markowitz

OPWDD wants to reach out to more families and individuals as well as MSCs and providers to share information regarding changes in the system and new programs. In the future, there will also be a feedback loop. There will soon be a way to sign-up on the web. More information to come.


FSS Booklet and FSS Guidance Documents

These are in the process of being updated. Kathy Nowak is involved in the update of the FSS Booklet.


Respite: New Rates – Kate Marley

Rate rationalization wasn’t working, where all providers in the same region got the same rate. Providers were in jeopardy of closing programs because they were losing too much money. Now OPWDD is proposing different rates for 5 categories of waiver respite: site-based, in-home, camp, recreation, intensive behavior. If CMS approves OPWDD’s proposed rates, they will be implemented July 1.


OPWDD’s 3-Year Housing Strategy – Kevin Valenchis

A total of 6,800 people need residential services over the next 3 years. Of these 6,300 live at home and 500 live in skilled nursing facilities, developmental centers, or state-operated ICFs.


Of the 6,300 at home, 4,900 need certified settings such as IRAs, and 1,400 need uncertified settings such as rental subsidies.


Each year 1,300 people vacate their residential placements due to deaths or moving out of state or other reasons. Thus over 3 years, there would be opportunities for 3,900 people (1300 x 3) to move in vacancies in existing residences (backfills). The 3,900 includes 150 uncertified vacancies.


Deduct 3,900 backfills from the total 6,800 in need. That leaves 2,900 to be placed over 3 years in NEWLY developed residences, of which 1,300 will be certified and 1,600 uncertified rental subsidies.


This is about 1,040 NEW opportunities this year (460 certified; 580 uncertified). Cost of the 1,040 is $48 million, annualized, coming out of the $120 million to fund all new services.


To qualify for the new opportunities, people at home must meet all 3 of these criteria: caregiver over age 70; caregiver challenges in meeting needs of person; ISPM score of the individual greater than 1 (one), the most independent level.


OPWDD bases these figures on assumptions of need from various lists: Residential Registration List, Certified Residential Opportunities list, Skilled Nursing Facilities eligibility, transitions from developmental centers.

Current unmet needs: Round robin of different regions

Common themes: Can’t find staff for programs, services, or self-direction. Can’t find ABA providers. Need more respite and afterschool; programs for people with challenging behaviors; overnight respite for a week or so in crisis; emergency placement options; services for those with both I/DD and mental health needs; transportation to FSS programs; respite for people who use wheelchairs.

Suggestion: Satisfaction surveys sent to users of family support services could be sent via e-mail.

  1. Speakers: Sharon Cyrus, SUS, and Dr. Roslyn Burton-Robertson, YAI, on the NYSTART program in NYC  START – ppt , START brochure,

NYSTART offers crisis prevention and response services to people age 6 and up who are OPWDD eligible and have complex behavioral needs and a mental health diagnosis or ASD with emotional and behavioral challenges.


Based on a model used in 12 other states, NYSTART provides training, consultation, cross-systems partnership, short-term therapeutic in-home supports, short-term therapeutic emergency and planned respite, crisis plan development, and a 24-hour crisis line for people already enrolled in NYSTART. NYSTART gets everyone involved with the person, including psychiatrists and ER, to communicate with each other and to be familiar with the crisis plan. They look at medications, sensory issues, and environmental issues. Services are generally from 12 to 18 months in duration, but once discharged a person can always re-enroll. START has proven to significantly reduce psychiatric hospitalizations.


NYSTART doesn’t replace anything in the system, but fills gaps, acting as consultants.


If a person is not eligible for NYSTART, NYSTART will make referrals elsewhere.

Please see the attachments for more information. Contact numbers:

Bronx, Manhattan, Queens: 212-274-6300

Brooklyn, Staten Island: 646-565-5890


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