NYSILC



New York State Independent Living Council (NYSILC)Full Council MeetingNov. 4, 2016Troy Hilton Garden Inn, Sage Ballroom9:00 AM – 4:00 PMCouncil Members Present: Zach Garafalo, Sue Hoger (Chair), Shelley Klein, Lindsay Miller, Henry Nixon, Sue Ruff, Ann Scherff, Chad Underwood, Doug Usiak, Joe Bravo, Bob Gumson (ACCES-VR), Robert Meek, Marc Rosen, Edith Prentiss, Clifton Perez, Keith Gurgui, Roger Benn, Helen Fang.Present by Phone: Brett Eisenberg, Luis GutierrezAbsent: Carla Lewis-IrizarryNYSILC Staff Present: Brad Williams, Amy Wink, Erin DwyerOpen ForumHelen Fang brought up the issue of Medicare open enrollment, and spoke to her place of work being available to help with questions or applications.Edith asked a questions regarding the possibility for EPIC (Elderly Pharmaceutical Insurance Coverage) expansion, and suggested that NYSlLC should talk more on this topic. Helen couldn’t answer the question, but pointed to an agency that might be able to answer. Sue Hoger spoke about her experience as a shelter volunteer during Hurricane Matthew in Georgia. The experience was positive, and she can expand on her experience for anyone who would like to know more. Minutes Full council minutes from September 16, 2016 full council meeting was reviewed and approved. Chad made a motion to approve the minutes, Doug seconded, and the motion was approved unanimously. Executive Director’s Report – Brad WilliamsSILC Consulting: Brad will be presenting with Ann McDaniels from the West Virginia SILC, on the new authorities and how to get them in your state plan. There will be a second part on the IL regulations. Annual website hits are tracked as a contract outcome, it was just shy of 400,000 website hits, a 30% increase from last year. Many hits came from outside of the United States. Brad followed up with My Blind Spot on the IL History and Tutorial. There is some work to be done to make this fully accessible, but the fixes will need to be done by someone other than My Blind Spot, because they are too expensive. They want $9200 for a month’s worth of work.Chad asked for examples on what kind of work My Blind Spot recommends to make the NYSILC website more accessible. Brad explained the few minor problems with the IL History and Tutorial and the test to make it fully accessible.Leadership Development and Civic Engagement Program vendor was switched from Larry and Liberteks to ES11. They have done some great work for the project so far. They are working on the homepage/landing page, and then will move on to include further content. We are working on draft webinars, marketing plan, media, evaluation, and preliminary grant applications. The Independent Living regulations have been finalized. The SPIL contract with ACCES-VR will be fully executed and signed any day now. The contract was mistakenly split between two designated state entities, ACCES-VR, and the Commission for the Blind. The SPIL regulations explicitly required that there be only one designated state entity, so NYSILC chose ACCES-VR as the one. The feds mistakenly still sent 16% of the contract money to the Commission for the Blind, and that mistake had to be remediated. Congress will need to pass another continuing resolution on December 9, and there is cause to be concerned if we have not had the funds dispersed prior to that date.Erin Dwyer gave an update on some of the work she has been doing researching and writing a webinar for the LDCEP on how to run for office, and collecting points of contact for the consumer satisfaction survey.Amy Wink has been working on the Consumer Satisfaction Survey links, making sure they all work, and having them translated into Spanish, Russian, and Chinese. Amy also continues to research possible grant sources for the LDCEP, as well as possible links and resources for the LDCEP web page, podcast and webinar ideas, and on website layout with Rocco from ES11.Edith brought up the need for inclusion of people with disabilities as volunteers on campaigns. This is a topic included in the LDCEP webinars.Quarterly Contract Report July-September.NYSILC full council meeting dates were discussed for 2017. The first is March 17, 2017. The other dates are Friday, May 19, 2017; Thursday, September 14; and Friday, November 3, 2017. The September 14th meeting will be a joint ACCES-SRC/NYSILC full council meeting. We would need their input, but we can commit to the date on our end. After discussion there was a motion by Edith to accept the dates, the motion was seconded by Zach. The motion was passed unanimously.Edith asked if the hotel can accommodate all of the access needs for both councils at the same time. SILC Congress—Brad will be presenting at the conference, and will be bringing the two new staff members to attend for training opportunities. Zach Garafalo is the Region 2 Rep, and he will also be attending the SILC Congress. It is in Phoenix, Arizona in January. Recognition of Members Terming off of the CouncilBrett Eisenberg, Shelley Klein, and Chad Underwood are terming off of the council. Brad thanked them for their service to NYSILC.Shelley served as the NYSILC vice chair and the secretary, and was also on development, public policy, and state plan committees. Shelley thanked Brad and the council for the opportunity and the educational experience of serving on the council.Chad thanked Brad and the council and stated that it has been an honor and privilege to serve on NYSILC, and he looks forward to staying involved and active. Chad and Shelley were both presented with framed certificates thanking them and commemorating their time on the council.As a former chair of the council, Chad was presented with a piece of artwork as a thank you gift.Treasurer’s Report – Roger BennRoger went over the quarterly treasurer report and the finance committee meeting minutes. A motion to accept the report was put forward by Edith and seconded by Lindsay. The motion was passed unanimously.Executive Committee Report – Sue RuffThe executive committee materials are in the packet, the September minutes were reviewed at the last council meeting. The council needs to replace Chad on the ACCES-VR SRC (State Rehab Council). There is not yet a volunteer for this position. It would require someone interested in serving on the ACCES-VR SRC in addition to the council meetings. Edith expressed interest in the position, but would need further information.The letters sent to the NYS Regents and the Governor have yet to receive a response. Sue encouraged everyone to read the letters.Brad spoke to Jennifer Mikel on the Regents Letter. She is the executive assistant and does the scheduling for the chancellor. She acknowledged that the chancellor receives a high volume of correspondence, but that she would see if she could get NYSILC a meeting.Lindsay said that the Regents is working on their budget priorities, and that they’ve been very supportive of ILCs in that regard. Perhaps when the budget piece is over, there will be more of an opportunity to meet. Bob advised to go to the chancellor with very clear and specific asks. He suggested asking how to implement the 5th core service to a greater extent, and the opportunities that redoing agreements with special education create for IL. Once there is a date the council has to decide who will be in the meeting, and what will be discussed. Regarding the letter to the governor’s office, Brad thinks the timing is good for another petition based on the content of the letter. The post-election poll will take first priority over the petition. Brad reviewed the subject matter of the letter, identifying priorities with implementing employment policies. Lindsay spoke regarding the Employment First implementation updates given by John Allen. He made reference to potential program bills in the works to move the initiatives forward. NYAIL also has a meeting with governor’s staff pending, whether the makes sense at this time, or to wait to see the outcome of that meeting. The letter includes the issues with integrated employment and sheltered work. Sue Hoger asked if the letter could be distributed to council members. By July 2017 ACCES-VR is responsible for contacting each sheltered work employee to do an overview of their career exploration options are outside of segregated work in areas of competitive and integrated employment. ACCES-VR is trying to figure out how they are going to accomplish this task. As Ann mentioned, there is a lot of pushback against ending the sheltered workshops. The ILC will in future likely be the best first point of contact for meeting people in these shelters. It cannot be a sheltered work provider. Sue Hoger mentioned that the end of the sheltered workshops has resulted in some high turnover at ACCES-VR, but a neutral person from an ILC would be welcomed by ACCES-VR to go in and speak to the people working in the sheltered workshops.Helen has noticed that ACCES-VR is hiring for these counselor positions throughout the state.Brad mentioned that consideration should be given to how the council will be involved with the integrated workforce alliance.Ray PearceRay Pearce spoke to the council regarding core rehabilitation contract updates since the WIOA regulations were finalized. For OPWDD rates and services, the CRS seemed low compared to other systems, and one goal with the new contract was to improve the numbers of people being served.Final regulations came out in August and gave a better idea of the direction they want to go, including adding $10 million to the annual budgets for services and vendors. Draft RFP has been submitted to senior staff for review. It will likely be posted by January or February of 2017. The goal is to implement the new contract in January 2018, finishing the original CRS contract a year early. This timeline is tentative.Changed due to WIOA: Self-advocacy for Employment is a new service for adults and student. There is a different version for the two groups with essentially the same services. Someone who is seeking employment and new to employment would work with a counselor to discuss what their rights are for reasonable accommodation, how to speak about your disability to your employer, etc. Customized Employment: There is more emphasis on customized employment in the new regulations. A vendor would work with the employer and the job seeker to design a job around the person and employer’s needs. Communication Coaching: Specifically those on the autism spectrum that may have trouble engaging with employers or professors. This provides support and help increasing communication skills. This is not exclusively for those with autism.Career Exploration Assessment: This is a service where the vendor could do interest inventory, person center planning to discover strengths, interest, and ability, and then developing a report.Job exploration counseling for students and post-secondary counseling for students for those age 16-21 pursuing a job or an education.The new regulations provide for using federal funding for extended supported employment for youth. There is also an emphasis on people learning on the job. There will be a code for work-based development for students to create internships. There will also be a service to provide the wages for the person in the job. Work-based coaching supports will also be available. Ray took questions on the contract to clarify the services and trainings that will be available.Helen Fang Helen gave a talk on the 55b employment process in the state of New York. She spoke of the process of getting 55b status as one that can be demoralizing. It is encouraged but it is a challenging process. There is a 55b portal, but the process of qualifying is stringent, you are only certified for three years, and then you have to be recertified. The state website job posting are updated every day. Helen gave examples of other websites and resources and testing to find state jobs. There is always more work to be done to create more job opportunities for disabled.LunchPresentation: Robert Kent, General Counsel, NYS Office on Alcoholism and Substance Abuse Services (OASAS). Recent trends in alcoholism and substance abuse and their treatment.Robert Kent spoke about the causes and challenges of the opioid addiction epidemic in New York State. He took questions from the council regarding the challenges, available beds, Medicaid coverage, and people in prison and jail who also suffer with addiction. OASAS has an online tool for finding available bed throughout New York State. Treatment deemed medically necessary requires no pre-approval, and whether the patient stays in treatment is not put into question until day 15 of treatment. Leaving New York should not be necessary because there are in-state options available. The question was raised regarding the situation where a patient needs full support in an addiction treatment setting, such a deafness, or paralysis. A question regarding changes in pain management and prescription drug availability was also raised. Robert Kent said that access issues should be addressed for any patient, and over prescribing has also been addressed by OASAS by changing the law regarding opiate prescription. For managing acute pain, the initial prescription can be for no more than seven days. Cancer care, chronic pain, and palliative care have been excluded from the definition of acute pain. Prescribers with a DEA registration will now have to get at least three hours of continuing education every three years on proper prescribing and treatment using pain management using opiate pain killers. Mr. Kent also suggested that beginning the training in medical school would be helpful. The issue of medical marijuana as a possibility for pain medication was also brought up. The use and availability of Narcan and training for its use was also discussed. It was reiterated that addiction is not a moral failing, but a disease. OASAS has invested in peer supports, there are 14 new recovery centers. The state is divided into ten regional economic development zones. OASAS has contracted with 20 with two in each zone, to create regional 24/7 capacity for peer support and peer engagement. OASAS has invested in peer supports. Peer support services are now Medicaid reimbursable in the OASAS system. This allows for reaching out beyond the four walls of the clinic to provide services. Peers have proven to be a useful tool for helping addicts. Mr. Kent said he’d like to see private insurance companies cover services instead of guarding against access to treatment.Sue Ruff suggested that to recruit more providers OASAS put more RFPs out on the website that do not need to go through the counties for approval. The great concern was reiterated for the great number of people effected by addiction, some of whom have several diagnoses. Sue also reiterated the concern for those with addiction problems who are incarcerated. ACCES-VR SRC: Chad UnderwoodChad reviewed the minutes from the June SRC meeting. The executive committee and the other committees are in the process of completing their annual reports for ACL. There was discussion on the department of labor state stakeholder meetings, they are in the process of putting together a summary of those the information from those meetings. The state rehab council is in the process of developing common priorities in relation to the WIOA that will guide committee work over the next year. There was extensive work relating to public hearings that will focus on specific WIOA policy changes. Public forums are coming up soon, and as a result of advocacy the number of forums and their accessibility has increased. The State Rehab Council reviewed progress relating to its information collection initiative which has been going on for two years, subcontracting with SUNY Potsdam to conduct consumer satisfaction surveys and analysis. ACCES-VR SRC has improved with interagency updates on vocational rehabilitation for those with disabilities. ACCES-VR: Bob GumsonWhen Ray Pierce was on there was one point on using core rehab services is that the whole area of work readiness was originally built around group work. Providers have found it difficult to find the critical mass to make it work their while, but the next CRS will have a work readiness and soft skill development resources. These are the basic, core independent living skills which IL is built around. There needs to be more peer integration. The first quarterly meetings of the VR and IL teams are in Westchester and Rochester. These are going extremely well, the VR are using the IL people extensively in their referral services. Trainings are being planned for groups of consumers, and there are also individual scenarios of how IL has kept individual people focused on career goals. Bob has been added to the work team that will do a RFP next July called career discovery initiative. It’s open to any provider to bring employment services to youth in school, age 14-21. This will be for in-school use for kids who are in k-12, parochial, trade schools, vocational tech schools, community colleges, etc. The way it’s been written there will be at least 20 projects throughout the state, looking at something in the six million dollar range. Commission for the Blind, Clifton PerezCliff is still waiting to be officially put on the commission, so there is nothing to report.SPIL Subcommittee, Sue Hoger and Brad WilliamsIt’s clear going forward under ACL that centers are to do an indirect cost rate under the Uniform Grant Guidance. The newest guidance is that SILCs get their resource plan in the state plan which then gets a contract that passes through the state. It could be cost allocation or indirect cost rate, and that is to be determined. Consumer Satisfaction, Brad WilliamsThe alternative language translation is almost complete. An adjustment was made to the gender question, and will be posted soon to the consume satisfaction webpage. Around November 7th a note will go out to the centers with instructions, and a request for the points of contact. Non-binary, gender neutral, gender queer, trans-male, and trans-female are some of the options now available to answer the gender question. These choices had to be carefully translated to avoid offensive mistakes. Everything was previously sent in a zip file, and now all of the information and materials will be available on a webpage. Public Policy, Brad WilliamsThe public policy committee has been working on the post-election poll. The professional pollsters were exorbitantly priced, so we went with the Survey Monkey option. We will send the survey to Marist after the fact with a letter, asking why they could not answer our request for pricing and information, suggesting that they incorporate the disability question in their surveys. Zogby and Sienna were the other two vendors, and we’ve also asked them to add the disability to question to their standard survey questions. The survey asks for zip codes, and if they answer outside of NY, we can get rid of that result. The various questions range from issues related to voting and access, candidate choice, party affiliation, issues, and demographics. The survey will be available for two weeks following the elections. Edith will be making cards with the URL to hand out to those she knows, but who are not on her email list. Doug wanted to be sure that the issues available to choose from are not exclusively disability issues. Brad reassured him that they are not, and general issue choices are available. Cliff reminded that NYSILC is going to work with NYAIL on transportation policy. One issue is paratransit parity with fixed route transportation. We need to get an assembly bill introduced, if we can get the Senate to introduce a bill in the new-year. Cliff has been working on the issue of making livery service wheelchair accessible for a long time. Ride share has become a big issue and many oppose the effort if they do not first address accessibility, especially when there is no legislation to insure that livery is accessible. The plan was to write two different proposals, one by Cliff on livery and one by Joe Rappaport on the ride share issue. Cliff will work with Meghan from NYAIL and ask for input. Brad reminded the council that they are now able to do statewide systems advocacy. This allows NYSILC to use public policy to find a direction, and Cliff can inform on transportation. Youth Subcommittee, Zach GarafaloZach has nothing to report at this time. Chad asked what Zach was doing to get the youth more involved in SILC congress. Zach answered that the youth leadership committee would like to share with other IL councils what’s been happening in New York to build this committee. Zach reminded the council that his time to lead the youth subcommittee will be coming to an end, and it will be someone else’s turn to lead in this capacity. Regarding Sue Ruff’s Executive Committee Report, there needs to be a discussion regarding the vacant Member at Large. Doug is interested in this. Lindsay made a motion to nominate Doug as the Member at Large, and Sue Ruff seconded. The motion passed unanimously. Emergency Preparedness, Sue RuffDave Whalen’s DDPC Award came through, which is a significant three-year grant. He will be traveling throughout the state to train emergency management personnel and establish core advisory groups that represent disabled people. He is also addressing an extensive curriculum on access and functional needs. The state human services committee announced that CMS has rules regarding emergency preparedness for different Medicaid and Medicare providers. There were 17 facility types that were impacted, and the information on those is available by contacting Sue Ruff, such as hospitals, transplant centers, hospice centers, and home health agencies. Shirley Madewell from the DOH is traveling around the state to do access and functional needs training. She has enlisted people from office from the aging to help. Sue can connect you with Shirley to involve those from Independent Living Centers. Development, Brad WilliamsResource development is now allowed under the new authorities, and there will be a development committee. The year-end appeal letter is coming up, and we will review WIOA regulation. There will be discussion for the future, as well as year-end rap up. The next meeting is November 7th. Database Workgroup, Roger BennThe next meeting is scheduled for November 14th. The committee is in a preplanning stage. They are trying to get things in line through to Sept. 2017. There are items to work through with the group and the vendor. The concept of the interface could be complicated, as the vendor has said that the interface will be disrupted by computer updates, and that is very time intensive. The concept put forward by the vendor is that the information can be downloaded form a portal. The fields should be realigned to the data that is in the ACCES-VR state reporting to reduce redundancy. Implementation should be in 2018-2019, and will require ongoing maintenance and support. Outreach, Roger BennEveryone had a chance to review the reports, so if there are any question, they can be taken now.Meeting Adjourned. ................
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