News alerts

10/6/22 –Disability Issues Candidate Forum

9/1/22 – ASSEMBLY STANDING COMMITTEE ON PEOPLE WITH DISABILITIES

9/1/22 – Southern Tier Independence Center, Inc. Comments on OPWDD’s Proposed 2023-27 Five-Year Plan July 2022

5/25/22 – 10 Ways Community Schools Help All Students and Families Thrive from 6 PM – 7 PM

5/10/22 and 5/17/22 – DEC, State Parks, and Adirondack Park Agency Announce Virtual Public Forums on Inclusivity, Accessibility, and Sustainability in the Outdoors

4/26/22 – COMMITTEE ON PRESCHOOL SPECIAL EDUCATION (CPSE)TO COMMITTEE ON SPECIAL EDUCATION(CSE) FOR FAMILIES

Click here for PDF link

4/8/22 – The Trauma Informed Policing model, which has gained national momentum as a result of calls for police reform, teaches officers to recognize trauma, understand its impact, and then de-escalate situations based on that knowledge.

3/9/22 – PARENT AND FAMILY ENGAGEMENT

2/10/22 – Students with Disabilities and Emergency Response

2-9-22My name is Kendra Scalia and I’m a Hudson Valley Leader with the NY Caring Majority, a disabled woman using Consumer-Directed Personal Assistance (CDPA), and I am a trained healthcare policy analyst.

2/8/22 – Governor Hochul signs bill reinstating the NYS Office of the Advocate for People with Disabilities: A Victory for all disabled New Yorkers.

1/27/22 – NEW YORK’S DISABILITY COMMUNITY STILL WAITING AS GOVERNOR HOCHUL HOLDS OFFICE OF THE ADVOCATE FOR PEOPLE WITH DISABILITIES BILL

10/19/21 – Watch this powerful short film on the home care crisis and signed a petition calling for increased wages for home care workers in New York.

10/12/21New York State Governor, Kathy Hochul, issued a proclamation declaring October 2021 as Disability Employment Awareness Month.

10/1/21STIC hosts Press Conference with Senator Kirsten Gillibrand in support of the Better Care Better Jobs bill currently in congress.

9/13/21 – September is National Preparedness Month, and FEMA has put together a webpage filled with information videos, and toolkits.

9/10/21 – Southern Tier Independence Center calls on Governor Hochul to support the “Fair Pay for Home Care” bill

9/9/21 – STIC Calls on Governor Hochul to Hire a Chief Disability Officer, and Sign A. 3130/S. 1836 Into Law

 

10/6/22 – Disability Issues Candidate Forum

HEAR FROM THE CANDIDATES listed below!

JOSH RILEY FROM 9:30A-10:30A

LEA WEBB FROM 11:30A-12:30P

RICH DAVID FROM 1:30-2:30P

MARC MOLINARO FROM 3:30P-4:30P

 

When: October 6th from 9:30am to 4:30pm

Where: 26 N Main St, Cortland, NY or Virtually

 

THIS NONPARTISAN EVENT IS SPONSORED BY:

REGISTER TODAY

IN-PERSON

VIRTUALLY

 

9/1/22 – ASSEMBLY STANDING COMMITTEE ON PEOPLE WITH DISABILITIES

Public Hearing

Tuesday, September 13th, 2022
10:00 am
Hearing Room B
Legislative Office Building
Albany, New York 12248

On April 15th, 2022, OPWDD released a draft 5.07 plan, identifying three major goals for the next 5 years. These goals consisted of:

1) supporting people in the most person-centered ways;

2) strengthening the workforce; and

3) improving service systems across the state.

The full plan can be found at the link below:

English Language:

https://opwdd.ny.gov/system/files/documents/2022/05/opwdd-507-draft-final-5.6.22_acc.pdf

Other languages:

https://opwdd.ny.gov/strategic-planning/2023-2027-draft-strategic-plan

The Committee is seeking input from stakeholders on the plan.

Oral testimony will be limited to three (3) minutes. The Committee will attempt to accommodate individual requests to speak at particular times in view of special circumstances. These requests should be made on the attached reply form or communicated to Committee staff no later than Thursday, September 8th, 2022.

Ten (10) copies of any prepared testimony should be submitted at the hearing registration desk or may be submitted by email to the contact listed below no later than two days prior to the hearing. The Committee would appreciate advance receipt of prepared statements.

Attendees and participants at any legislative public hearing should be aware that these proceedings are video recorded. Their likenesses may be included in any video coverage shown on television or the internet.

For individuals with disabilities, accommodations will be provided, upon reasonable request, to afford such individuals access and admission to Assembly facilities and activities.

Thomas J. Abinanti
Member of Assembly
Chair, Committee on People with Disabilities

 

9/1/22 – Southern Tier Independence Center, Inc. Comments on OPWDD’s Proposed 2023-27 Five-Year Plan July 2022

About Us

Southern Tier Independence Center, Inc. (STIC) is a Center for Independent Living that was established in 1983 and is located in Binghamton, NY. We provide a broad array of services and supports to people with all types of disabilities of all ages across over a dozen counties in south-central New York. Our OPWDD-funded one-on-one Community Habilitation, Supported Employment, Intensive Behavioral Supports, and Housing Subsidy services serve Broome, Chenango, and Tioga Counties. We have also recently become an OPWDD Self Direction Fiscal Intermediary. Our experience with providing OPWDD-funded services goes back well over 20 years, and we have been involved in various partnerships with OPWDD to develop service policies during that time.

Crisis Services

As providers and advocates in Region 2, we are painfully aware of the very slow progress in OPWDD’s efforts to roll out a START-model crisis intervention program in our area. At long last, a provider has been found that is willing to operate the program here. However, that provider is not native to this area; they are from New York City. We can’t be highly critical of this decision; after all, the effort to find a provider in our region that would accept the important elements of the START model—especially, elimination of the silo walls between developmental disability and mental health services—as well as responsibility to implement them across such a large geographic area, was ongoing for several years without results.

However, we must urge caution and care: The Young Adult Institute is not experienced in serving rural areas and must be educated to do so. The way to do this is to ensure that local stakeholders have strong positions of authority in their program for our region.

We also must point out that local OPWDD officials in our region seem to be under the impression that the START CSIDD system consists mostly of an inpatient respite facility. That is not consistent with the START model. START requires a mobile response directly to the home or other location of an individual in crisis within one hour of the request, and rapid development of a full service plan to address the person’s needs, with inpatient services included only if they are the least restrictive option to meet those needs. The top priority locally is rapid multi-disciplinary team response and wrap-around service planning and provision, including community-based behaviorally-oriented habilitation services, not creation of a new institutional setting.

Workforce

As OPWDD acknowledges, the number-one priority of virtually everyone concerned with people with developmental disabilities in New York is the lack of an adequate direct-service workforce. The situation has been exacerbated by the pandemic, but has been ongoing for a very long time. In 2019 (or perhaps earlier; we learned this at a presentation from a DDRO official and we don’t have the date on record), prior to the advent of COVID-19, our DDRO announced it was starting its own Community Habilitation program to address  people’s already longstanding difficulty with finding DSPs.

The proposed five-year plan’s summary of stakeholder feedback includes this item: “Establish career ladders with pay parity which mirrors those of State operations’ employees,” but the plan fails to address that issue in any meaningful or coherent way.

ARPA money is being used to address workforce issues, but almost all of that money will go directly or indirectly to benefit DSPs who are already doing the work. Turnover is certainly part of the problem, but ARPA longevity bonuses, being temporary, can only delay, not stop, existing DSPs from quitting to take better jobs. There were not enough DSPs before the pandemic, and these benefits for people who already have these jobs do very little to increase the number of DSPs. The situation is dire.

Virtually nothing in OPWDD’s plan will permanently increase wages for DSPs. The notion that increased training will lead to increased wages is deeply flawed for two reasons. The first reason is that most DSPs are already adequately trained to do their jobs. The second reason is that there are no proposals to actually increase wages for any DSPs in this plan; only vague assumptions that more training somehow leads to more money. There can be no relationship between training levels and wages unless OPWDD/DOH actually issue permanent increased rates for those jobs. We see no evidence of any plan to do so here.

We understand that DOH sets rates, not OPWDD, but OPWDD is recommending rate increases in other areas of this plan. It needs to recommend permanent rate increases for stand-alone one-on-one Community Habilitation services as well.

Perhaps some details about STIC’s experience during the pandemic will help OPWDD and DOH planners better understand the problem.

STIC, unlike several voluntary OPWDD service providers, operates no segregated congregate programs or services: no group homes, no site-based day programs, and no small-group services. We only provide one-on-one Community Habilitation (with very rare exceptions when two siblings wish to be served together) and one-on-one Supported Employment. Those programs are the sole source of the funds that we have available to pay DSPs.

In June of 2019, prior to the pandemic, STIC had 139 DSPs employed. In June of 2022 that number was 71—a loss of about 50%, with a concomitant loss in revenue. The program’s consumer base decreased significantly during the pandemic, but now many of those people would like to return. We are having extreme difficulty in hiring more DSPs to serve them. Our current DOH-approved rate for Community Habilitation only allows us to offer new DSPs a starting wage equal to the current upstate non-fast-food minimum wage of $13.20 an hour. We advertise these positions, and we get inquiries from prospective workers, but as soon as they hear about that rate of pay, they turn down the job offer. Telling them they can get retention bonuses after six months has no effect on this problem; they can get other jobs for significantly higher wages right now, many of which also provide raises after six months. In fact, many DSPs have been able to get a much higher wage by shifting to work for OPWDD Self Direction consumers. Although the Self Direction flexible budgeting model is a very good thing, it is now creating unexpected but very real competition for DSPs. Before the pandemic, STIC was able to hire ten Community Habilitation DSPs per month, now we are fortunate if we hire one.

The 2% workforce increase we received in 2020 and 2021 for DSP wages doesn’t help as much as you may think. That percentage only applies to billable service hours, not to all of the hours that DSPs actually work, which means it does not directly translate into a 2% increase in DSP wages—which itself would still be well below the rate of inflation. A 2% increase on $13.20 per hour is only $.26 per hour, a far cry from what is needed to compete in the current climate.

There are also irrational differences in billing rules between OPWDD Community Habilitation and OPWDD Supported Employment. In Supported Employment (and the Employment Training Program—ETP—as well), we can bill for employee travel time, employee training, and documentation/office time, as well as for actual service provision. In Community Habilitation we can only bill for direct service time. Non-direct-service activities are just as essential for Habilitation DSPs as they are for job coaches and job developers. If we could bill for that time in Community Habilitation we could offer better wages for those jobs. Additionally, we are also required to provide behavior plans and support (consistent with 14 NYCRR 633.16), requiring additional training, as well as Electronic Visit Verification (EVV), which requires very expensive software that is paid for on a per-worker basis, without being able to bill for it. And under SEMP we can use the resources of Eleversity to meet a variety of needs that we must expend funds to meet under Community Habilitation.

In 2021, our Community Habilitation individual-service rate was $43.12 per hour, while our Supported Employment individual-service rate was $86.00 per hour. Because of the differences between Community Habilitation and Supported Employment (SEMP) reimbursement practices, we can pay job coaches and developers much better wages than we can pay Community Habilitation DSPs. The figures below will illustrate why.

In 2021 our Community Habilitation program spent the following for required behavioral support, required training, direct travel time, office/documentation time, and EVV, none of which are directly billable for Community Habilitation. SEMP does not require behavioral support or EVV, but all of the other items are billable under that program, which pays double the rate.

Behavioral support, which requires advanced skills and training, is based on an average wage of $22 an hour, times 40% fringe benefits cost.

Required training, travel time, and documentation time are derived by multiplying the number of hours times our average hourly wage for DSPs, $14.37, plus the fringe rate of 40%.

EVV is based on the percent of our total EVV costs (we also have a CDPA program) that is attributable to Community Habilitation DSPs.

Behavioral Support: 1,144 hours = $25,171 + fringe benefits = $35,239

Training: 1004.5 hours = $14,435 plus fringe = $20,209

Travel time: 1,139.6 hours = $16,377 plus fringe = $22,928

Office/Documentation time: 2,258 hours = $32,447 plus fringe = $45,426

EVV and related services: $18,802

The total in 2021 was a minimum of $142,604 in costs that were not directly billable to Community Habilitation and which had to be paid for out of our rate, thereby drastically reducing the wages we could pay to DSPs. And in addition to the aforementioned costs, STIC also has to account for agency and program administration, as well as general operating expenses. 

We have raised these issues with Region 2 OPWDD officials. They have taken the matter to DOH, and they reported back that DOH claims that our current rate can support higher wages because other Community Habilitation providers in our region are paying such wages. That may be true, but in our region there are virtually no other providers that exclusively offer one-on-one Community Habilitation services. Most of those other providers largely focus on small group services. Group rates are higher than rates for individual services, enabling providers to pay higher wages to DSPs who work with a small group of people. But the goal of Community Habilitation services is to do more than keep people with developmental disabilities busy and under supervision during the day. The goal is to fully integrate them into community activities. A small group of people with developmental disabilities parading from place to place in the community does not establish a typical environment that matches what nondisabled people experience. Because of the fundamental fact that people with intellectual disabilities do not easily generalize skills learned in one environment to other environments, group services are less successful in enabling people to maximize independent functioning in community locations. Also, in small group situations it is inevitably true that individuals do not receive training and support at the same level of intensity as they do in one-on-one service. The people we serve and their families find greater satisfaction in the one-to-one experience and they would not willingly agree to change to a group service even if we were willing to offer one.

It may be OPWDD’s and DOH’s position that they would rather pay group rates than higher rates for one-on-one service to save money. That does not explain why they pay much higher rates for one-on-one SEMP, a program that also offers a group rate. Perhaps the explanation is that Community Habilitation services are open-ended and may continue for years, while SEMP is time-limited. Or perhaps the reason is that more OPWDD-eligible people are in Community Habilitation than are in SEMP.

If that’s the rationale, it is inappropriate, and perhaps illegal. These rates create financial incentives to provide group services in Community Habilitation that do not exist in SEMP. The effective result is unequal treatment of people with disabilities based on their employability potential. A small-group Community Habilitation participant is less likely to achieve maximum community integration in their daily activities than a one-on-one SEMP participant, because group-based services are less effective in establishing the necessary skills and relationships than one-on-one services are. This could violate the Americans with Disabilities Act prohibition on unequal treatment based on disability. Even if it does not, this kind of inequity is morally reprehensible. It inherently assumes that the life experiences of one group of human beings are worth less than those of another group.

OPWDD also exhibits a bias in favor of congregate site-based Day Habilitation programs. Data from the proposed five-year plan show that segregated congregate day programs receive almost twice as much money per participant as Community Habilitation (page 7: in 2020 day programs got $32,670 per participant on average; comm hab programs got $16,109 per participant on average). That bias was made cruelly evident by the pandemic.

As indicated above, during the pandemic we lost approximately half of our DSPs, as well as a significant number of consumers, resulting in a major loss of revenue, but we continued to do our best to provide the same individualized services to those people who chose to continue to receive them. Yet unlike site-based programs, we were not given any consideration when “retainer payments” were announced, primarily to assist site-based programs that could no longer bill for services because they were closed. In order to get the retainer payment we would have had to “have a signed agreement to either provide/use staff for an OPWDD residential provider or emergency ‘step-down’ intensive respite facilities.” In other words, we would have been expected to “loan” our DSPs to residential providers on demand. We could not comply with this, because we needed our reduced pool of DSPs to continue working with our consumers, most of whom live in the community either alone or with family. Therefore, we were not compensated for the significant revenue losses that we experienced. Site-based programs were helped to survive, while community-based individualized services were virtually ignored. We brought this to OPWDD’s attention on multiple occasions, but never received assistance or even an adequate response.

Another massive inequity in OPWDD’s service system is the difference in wages between DSPs working in the state-operated sector and those in the voluntary sector. Voluntary providers will continue to have difficulty recruiting DSPs even if the issues discussed so far here are adequately addressed, if they have to compete with state-operated programs for those workers. At least in some sectors of OPWDD, agency officials have a clear bias against incentivizing expansion among voluntary providers of fully integrated Community Habilitation services. This bias was demonstrated by our DDRO which, as described above, preferred to introduce a state-operated Community Habilitation program which, being unionized, offers considerably higher wages to DSPs, in order to compete with the voluntary sector, rather than increase the rate for voluntary providers so they can recruit more workers. This is obviously not really driven by efforts to be cost-effective or frugal, because state-operated programs would still remain more expensive than voluntary programs even if the latter received a reasonable rate increase. Something else is motivating this behavior.

As for OPWDD’s bias in favor of congregate vs integrated services: We think most people in  the policy-analysis and research centers at OPWDD would agree that most of the people in congregate day programs would fare equally well, or better, in integrated one-on-one Community Habilitation. Elements of the agency’s Central Office have worked to promote integrated individualized services for everyone, but have encountered resistance from providers and some parents. On the parents’ side, some of that resistance is grounded in the gaps in reliability between the two programs. Congregate day programs come with guaranteed backup, while Community Habilitation does not. If Community Habilitation programs were reimbursed at the same level as site-based programs, they would be able to increase wages for DSPs to the point that backup workers could be reliably recruited. On the provider side—operators of segregated congregate or small-group programs simply do not want to have to compete on a level playing field with providers of fully integrated one-on-one models. OPWDD has no business supporting that position.

OPWDD needs to exercise forceful leadership, including recommending rate changes to DOH, to clearly establish three things: First, the desire for full community integration among people who are not likely to be gainfully employed in the near term is just as important as that desire among people with paid jobs, regardless of whether they can use Self Directed Services with its ability to pay higher wages. Second, the concerns and needs of service providers that do not operate congregate site-based or small-group community programs must receive equal consideration and those providers must be treated as equal partners. Third, the financial incentives available to both types of programs must be fully equalized.

Housing Supports and Residential Services

It appears that OPWDD has adopted some of the recommendations from the Developmental Disabilities Planning Council report Reclaiming Innovation in Housing: Overcoming Institutionalized Models of Service Delivery in New York. We support this promising change in direction.

 

Especially exciting would be the proposed reforms leading to “portable funding for people who choose to make changes to their residential supports.” Of course, the devil is in the details. All of the previous iterations of OPWDD funding support for community-based and integrated residential services, stretching back for more than two decades, have included the claim that the services would be highly individualized and would well support people who wanted to live in their own homes, or in one-person supported housing. Those promises have repeatedly failed to materialize.

 

The reason for that is easily understood: Demands from operators of segregated congregate custodial housing services that OPWDD ensure that their prerogatives and preferences are fully preserved have overridden the efforts to achieve real reforms. Although the incidence of severe intellectual impairment (IQ under 50) necessitating 24/7 oversight among people with developmental disabilities is only about 5% (and the incidence of other factors that may justify such overarching supervision and control, such as Prader-Willy Syndrome or co-occurring severe and persistent mental illness or medical fragility is, perhaps, another 5%), OPWDD has historically focused on creating housing systems that meet the needs of the tiny minority of its constituents that have the highest levels of support needs, rather than ensuring that the vast majority of the people it serves can have flexible housing supports that are not paternalistic or otherwise restrictive of their personal autonomy or civil rights. The financial incentives thus created have resulted in an entrenched mindset in favor of large certified supervised IRAs among providers that is accompanied by significant political support.

 

Every time reforms are proposed to level the funding playing field between these providers and those that would offer fully-integrated individualized supports in people’s own homes or subsidized generic housing, these providers complain that those reforms will endanger their own continued operations. They then get influential family members involved to support those complaints, and they prevail upon politicians and OPWDD leadership to dilute or drop those reform efforts.

 

Such reforms would not actually prevent existing providers from continuing to do what they have been doing. The issue is that these providers do not want to face competition from providers that can offer more choice and better quality of life to people with developmental disabilities.


OPWDD does not suffer from a dearth of good ideas that could really change the system. Historically, however, it has suffered from a lack of will to insist that those ideas be put into practice, everywhere, all the time. This is what really needs to change over the next five years.

 

The proposals concerning rate-setting are only one side of the equation. The other side is obtaining funding appropriations to pay those rates on demand. ARPA funding is temporary and will terminate before the end of this five-year plan cycle. There is not enough attention in the plan to the question of how these levels of funding will be maintained beyond the end of ARPA.

 

The DDPC report indicates that housing subsidies for non-certified generic housing available to the low-income people whom OPWDD serves were never fair because they were not based on prevailing market rates, and they have long since ceased to keep up with inflation. OPWDD states that it continues to ask for increases in housing subsidies. Asking is fine, but what is the backup plan when the answer is “No”? What OPWDD needs to do is to commit to a phased plan to reallocate existing funding to achieve equity between segregated congregate services and integrated individualized supports—a plan that will proceed regardless of whether subsidies are increased or not. There is a significant percentage of people in supervised IRAs who, due to IQs above 50 and/or the lack of other objectively measurable factors necessitating 24/7 support, do not need to be there. OPWDD itself acknowledges this on page 17 of the plan: “Likewise, OPWDD has worked to identify people with lower acuity needs who are receiving state-operated services who might benefit from residential opportunities provided by nonprofit agencies and offer them opportunities to transition to a home that may better suit their needs and desires.” The excess funds used to support those people in those facilities must be moved out of those facilities and into less restrictive and more integrated and flexible settings, where they can support more people. The notion of housing choice—and choice in general in the OPWDD system—is critically important, but that absolutely does not mean that people have the right to “choose” to get more services than they actually need.

 

OPWDD should also specifically move forward on other recommendations in the DDPC report, including “Incentiviz[ing] agencies financially to reduce the number of shared bedrooms where people do not wish to share by providing bridge financing and gradually phasing out extra-bed payments.” OPWDD should fully adopt the report’s recommendation that the Congregate Care Supplement should “follow the individual into the community if they move to non-certified housing”. The paragraph in OPWDD’s plan that obliquely references this concept strongly implies that those funds would remain under the control of OPWDD for distribution to service providers. That’s not enough. The funds should be under the control of the person who receives services, for any chosen use, including supplementing rent or mortgage costs, or for home furnishings, supplies, vehicle lease or purchase, or any other legal purpose.

We also urge OPWDD to ensure that 100% of new group homes will house no more than four unrelated adults. We understand that OPWDD policy contains statements suggesting that OPWDD prefers to do this, but that policy also permits the OPWDD Commissioner to grant “exceptions” to that rule. The result is that there is no actual enforceable rule at all. We know that many residential providers are reluctant to change their business models and procedures in order to offer smaller group homes (such as leasing rather than purchasing property). This is unfortunate, but catering to those providers simply will not change the situation rapidly enough. Such providers should be told that unless they adopt plans both to create only smaller new group homes but also to transition people out of their existing large group homes into smaller ones, they will have their existing funding transferred to providers who agree to do so.

Self Direction

Many people whom STIC serves have taken advantage of the OPWDD Self Direction program (the full version, not the service-specific “agency with choice” options) and are highly satisfied with that program’s ability to flexibly allocate funds to ensure that adequate wages can be paid to DSPs, as well as with the program’s additional service options, such as Individual Directed Goods and Services (IDGS) and Live-in Caregiver.

On the other hand, the program remains difficult for many people to use due to the time required to administer it and the complexities of that administration, and there are also inequities involved in OPWDD’s limitation on the availability of certain services only to Self Direction participants.

As a Fiscal Intermediary for the program, we have identified some specific issues:

  1. Although the program can enable higher wages, it can require a trade-off. With the current available budget levels, higher wages can come at the cost of reduced hours of service. Recruitment can still be a problem, especially when family members have not identified someone who is likely to be motivated by factors other than money to do the work.

  1. Even if a family identifies a prospective worker, it can take so long for OPWDD to process and approve an individual budget that the worker is forced to take another job.

  1. Brokers have not had a wage increase for many years. Although $40.00 per hour seems like a lot, brokers are independent contractors and all of their businesses expenses must come out of that rate. They pay for their own fringe benefits (including FICA, Medicare, SUTA, etc., as well as health insurance), mandatory trainings, office supplies, access to encrypted email services, mileage and all other incurred expenses.

  1. Brokers need more support from the DDRO. There needs to be a person dedicated to extending extra trainings, including on how budget numbers are derived, as well as answering their questions and helping to decipher all the different FI requests and demands placed upon them as independent contractors. The Broker is usually the first person an OPWDD approved Self Directed Services individual will meet with. The Broker needs to understand the concepts behind the formula for non-face-to-face billables, the fringe rate, the housing percentages, the difference between the NYS contract, FSS and Medicaid billing systems, as well as a better understanding of what the services are.

  1. The individual DDROs around the state need to be on the same page in terms of what they tell FIs, Brokers, and Care Managers about the Self Direction program. There are many details of administration that are not clearly explained in OPWDD administrative guidance. As a result, when questions are asked, the DDRO may respond with anecdotal information about how the largest FI in their region handles the issue—a response that may not be helpful for, or even relevant to, another FI. If the FI then points out that the suggested course of action won’t work for them, the DDRO tells them something different. Over time the result is a collected body of informal answers to questions that vary from DDRO to DDRO.

  1. It should be mandatory for the FIs, Care Managers and Brokers to attend the same trainings simultaneously, so they can understand the information in the context of each others’ processes. This will help to streamline development of new budgets and enable more efficient management of existing budgets.

We would like to point out that OPWDD’s refusal to make Self-Direction-only services such as IDGS and Live-In Caregiver available to people who do not participate in full Self Direction creates inequities based on whether those participants are able to self-direct their services themselves or through a designated representative. People who can’t self-direct services may be just as much in need of those services as people who can. The fact that OPWDD has not established a viable mechanism for administration of those services—such as by establishing another Care Management tier with much smaller caseloads for Self Direction participants, or by allowing the addition of an  administrative Broker to the person’s service plan—is not an adequate reason to fail to eliminate these inequities.

Care Management

The five-year plan’s summary of public feedback from stakeholders includes this item: “People living on their own are categorized as a tier 2 on a care manager’s roster. They actually take far more of a care manager’s time than most of the people who are designated tier 4. Re-evaluate caseloads of Care Managers.”

Back in the mid-2010s, when OPWDD was working on plans to address the CMS conflict-of-interest regulations, we warned the agency repeatedly that for people not living in segregated residential facilities, the people then known as Medicaid Service Coordinators were far more than just paper-pushers. They acted as frequent sounding boards, informal counselors, emergency problem-solvers, advocates and—yes—trusted friends for people who need a myriad of momentary forms of assistance, small and large, on a regular and frequent basis. In short, Medicaid Service Coordinators (MSCs) were the “glue” that helped people keep their lives together, an essential service for people’s health and well-being that cannot be replaced, and we told OPWDD, in October 2016, “Fortunately, we don’t have to invent a new solution for this problem. We already have one: MSCs. OPWDD just needs to avoid breaking this already effectively working system.”

What did OPWDD do? They broke the system, and the agency has been receiving a high volume of complaints, about both the lack of personal attention and easy availability, and about the failure of Care Managers to effectively advocate for people who are facing issues with school districts, service providers, landlords, and others, ever since. There are some Care Coordination Organizations, or, at least, some individual Care Coordinators, that still value extended personal service, but it is very clear that many of them, especially those serving the downstate region, do not.

So we fully support the statement quoted from OPWDD’s own plan. Care Managers who work with people who are not housed in congregate settings need much smaller caseloads, and they need to go back to rendering the full service that MSCs used to provide.

Managed Care

The five-year plan appears to indicate that OPWDD has listened to the feedback from stakeholders concerning the likely negative effects of a transition to managed care and is now backing off from any definite plan to undertake such a transition. We strongly support that decision, and we are confident that if OPWDD conducts its proposed evaluation study of managed care for people with developmental disabilities fairly and objectively, in the absence of political pressure from officials under the influence of the managed care insurance industry, it will conclude that this plan should be dropped permanently.

5/25/22 – 10 Ways Community Schools Help All Students and Families Thrive from 6 PM – 7 PM

Join us to learn more about Community Schools and the role they play in promoting student success in many area schools. During the event, presenters will share the key features of a community school approach, the different community school approaches happening across NYS, and the array of university-assisted community school programs, priorities, services, and challenges in our region.

Presenters:

Liz Anderson, Ed.D, Associate Professor at Binghamton University, currently serves as Director for the NYS Education Department Central/Western Region Community Schools Technical Assistance Center. Liz’s research examines the intersections of academics, mental health, and health and the potential impact on learning, development, and behavior. Through her work, Liz seeks to support the whole child by improving the alignment and integration of programs and services across sectors.

Elissa F. Brown, PhD, Director of the Binghamton University Community Schools, Regional Network. From 2012-2021 she is past director of the Hunter College Center for Gifted Studies in NYC and served as a distinguished lecturer and program leader in Special Education. She supported all NYC schools with professional development, research, serving on task forces, and working with educators on ways to differentiate instruction and build systems capacity in schools.

Luann Kida, MA, LMSW, Executive Director of Binghamton University Community Schools leads and supports the multiple component projects associated with their university-assisted community schools’ approach. Luann began her career in higher education supporting students with disabilities to ensure they are aware and connected to resources needed to support academic success. In her current role, Luann continues to promote the university assisted community school approach as a systemic way to address educational equity for all children and their families.

Naorah Rimkunas, PhD, MS, Assistant Professor at Binghamton University, with expertise around university-school partnerships; community schools; broadening participation in science, technology, engineering, arts, and math (STEAM) education initiatives; and inter-professional collaboration in school-based settings. As director of the University-Assisted Community Schools Regional Training Center, Dr. Rimkunas provides technical assistance for leaders in higher education to develop strategies to form university-school partnerships in PK-12 schools.

Registration:

https://drny-org.zoom.us/meeting/register/tZMvcO6orj4tGtCrZsIlDCdmATszs8dz8SHT

Upon completing registration, you will receive an e-mail with webinar call-in information.

All trainings will have closed captioning. ASL interpretation available upon request.

Need additional information or any accommodations?

Contact Nancy Nowak at Disability Rights New York: Nancy.Nowak@drny.org or 516.238.1261

Websites:   NY Special Ed Task Force  Disability Rights New York

When: May 25, 2022 06:00 PM Eastern Time (US and Canada)

Register in advance:

https://drny-org.zoom.us/meeting/register/tZMvcO6orj4tGtCrZsIlDCdmATszs8dz8SHT

After registering, you will receive a confirmation email containing information about joining the meeting.

 

5/10/22 and 5/17/22 – DEC, State Parks, and Adirondack Park Agency Announce Virtual Public Forums on Inclusivity, Accessibility, and Sustainability in the Outdoors

Lunchtime Sessions Feature Introduction by Kimberly T. Hill, Chief Disability Officer for Governor Kathy Hochul

Tuesday May 10th and May 17 –  click here to view event info PDF

4/26/22 – COMMITTEE ON PRESCHOOL SPECIAL EDUCATION (CPSE)TO COMMITTEE ON SPECIAL EDUCATION(CSE) FOR FAMILIES

Click here for PDF link

 4/8/22 – The Trauma Informed Policing model, which has gained national momentum as a result of calls for police reform, teaches officers to recognize trauma, understand its impact, and then de-escalate situations based on that knowledge.  The Binghamton Police Department, in collaboration with the Care Compass Network’s Regional Trauma Informed Care Network, the Mental Health Association of the Southern Tier, and STIC worked together to create a curriculum and train 156 of our local officers. This is what teamwork can accomplish!

3/22/22 – Consumer Directed Personal Assistance Association of New York State – Click here for video link

3/9/22 – PARENT AND FAMILY ENGAGEMENT WITHIN THE FUNCTIONAL BEHAVIORAL ASSESSMENT (FBA) & BEHAVIORAL INTERVENTION PLAN (BIP) PROCESS 6pm to 8 pm online via Zoom

Register Here

 

2/10/22 – Students with Disabilities and Emergency Response

Niagara University Disability Awareness Training (NU DAT) is currently working the states of New York, Louisiana, South Dakota, Missouri and Nebraska to educate anyone involved in emergency planning, preparedness, response, and recovery as it pertains to individuals with disabilities and access and functional needs. NU has tailored a presentation that identifies the responsibilities of parents, school districts and emergency responders in an emergency. This program will introduce their First Responders DAT and components of the Emergency Management DAT as it pertains to the intended audience.

Topics to be discussed:
•    Defining Access and Functional Needs
•    First Responders and their Responsibility in Special Education
•    Emergency Planning and Preparedness-Special Education and the School District
•    Evacuation Planning and Students with Disabilities
•    COVID-19 and Persons with Disabilities

Presented by Dave Whalen:

David Whalen has been in the field of disabilities since 1986, founding Disability Awareness Training in 2004, having presented some 650 times, 250 in the field of first/emergency response. He is the Project Director of the Niagara University First and Emergency Responder Disability Awareness Training programs, creating the nation’s only comprehensive training for law enforcement, fire fighters, emergency medical services, and 9-1-1 telecommunicators.

 
Dave’s background in emergency planning, preparedness, response, and recovery includes chair of the New York State (NYS) Independent Living Council emergency preparedness committee, a FEMA Access and Functional Needs trainer, presenter at FEMA Get Real, and NYS Emergency Managers Assn. conferences

Date/Time: Wednesday, March 9, 2022

Time: 6PM – 7:00PM

Registration: https://drny-org.zoom.us/meeting/register/tZYodu2hqD4rE9IYtxhOQbEO368TeXKzJFNN

SPACE IS LIMITED. Upon completing registration, you will receive an e-mail with webinar call-in information.

All trainings will have closed captioning. ASL interpretation available upon request.

Need additional information or any accommodations? Contact Nancy Nowak at DRNY.

Nancy.Nowak@drny.org or 516.238.1261

 2-9-22My name is Kendra Scalia and I’m a Hudson Valley Leader with the NY Caring Majority, a disabled woman using Consumer-Directed Personal Assistance (CDPA), and I am a trained healthcare policy analyst.

Last year at this time I submitted testimony to this Legislature regarding the home care crisis our state continues to ignore. I told you about my experience losing three personal assistants (PAs) during the start of COVID and how I had just one PA working seven days per week. I expressed the importance of Fair Pay for Home Care workers – to make it possible to recruit new workers to this field. And I also let you all know that, “I live in constant fear that should something happen to my personal assistant or should he find a better paying job, my literal independence and freedom will be taken from me overnight.”

I wish I could sit here today and tell you that I’ve hired workers, am able to eat a hot meal every day, and that my fears of institutionalization are quieted. But this body failed to provide the bare minimum attention to slow down the home care workforce crisis last year. And so, today, my fears are being realized. My one PA cut back his hours because he found that better paying job. Not a single candidate in 18 months has accepted a job offer with me for $13.20 an hour. Parts of my independence have been lost, as entire areas of my life I simply can’t engage in.

Because my one PA can only work four hours at night, I’m forced to go without the toilet all day long. I stay in the same position in my wheelchair for 20 hours at a time. I sleep in my wheelchair five nights per week because I have no one available to get me out of bed in the morning. The limited help I receive is packed with bare essentials of survival, such that upkeep of my home is neglected; physical therapies and respiratory treatments are skipped more frequently than they are provided; medical appointments are all but impossible to attend in-person; and I’ve developed additional medical conditions that could have been wholly prevented were home care worker wages raised because home care is health care.

If you visited my home today you would find my bed covered in small plastic bins holding remote controls, switch activating buttons, telescoping reachers, and zip lock baggies of cashews, cheerios and protein bars. A dozen opened water bottles with straws floating inside line my kitchen table from one corner to the other, allowing me the ability to at least stay hydrated while I spend more than 80% of each day without care that I need.

We need Fair Pay for Home Care in the budget (A.6329/S.5374A). Governor Hochul missed this opportunity in the executive budget – proposing one-time bonuses that will not come close to solving the home care workforce shortage. The solution is Fair Pay for Home Care – and we are relying on YOU, our state legislators, to make this happen in the budget. When our workers are paid well, disabled and senior New Yorkers who rely on home care workers to live independently are able to fill these positions. We’re able to receive the health care we need to be safe and stay healthy.

(She did not read this paragraph in her testimony but it is included in her written comments). And if you’re someone who sympathizes more with the fiscal responsibility to the statewide community, I have great news for you – based on a CUNY study, Fair Pay for Home Care would generate $5.4 billion in economic benefits for New York State! It does so while improving an essential healthcare service. The data and analysis are in, and it’s simple– we need Fair Pay for Home Care and Fair Pay for Home Care is a win-win for each constituency involved.

The time is now to address the crisis of long term care. I hope next year I find myself back at this budget hearing to tell you about the fabulous personal assistants I was able to hire after you
passed Fair Pay for Home Care in this year’s budget; how my health improved and I no longer need these additional medications; and how comfortable my body feels when I am finally able to lay it down to rest on my soft, warm bed every night once again like all of you.

Southern Tier Independence Center (STIC) Calls on Governor Hochul to Hire a Chief Disability Officer, and Sign A. 3130/

S.1836 Into Law, Reinstating the Office of the Advocate for People With Disabilities  

There is currently no one single office that represents people with all types of disabilities in New York State government. This year, the legislature recognized that people with disabilities need greater representation and passed A.3130 (Steck) / S.1836 (Skoufis) to reinstate the Office of the Advocate for People with Disabilities.

This office was tasked with advising and assisting the governor in developing policies designed to help meet the needs of people with disabilities and served as the State’s coordinator for implementation of 504 and the Americans with Disabilities Act (ADA). But this office no longer exists and there is no office to represent the interests of people with disabilities in state government.

Governor Hochul has an opportunity to break with the past and send a strong message to disabled New Yorkers that their needs and rights matter. 

Originally established by Governor Mario Cuomo through Executive Order, the Office of the Advocate was intended to provide a formal voice within state government for New Yorkers with disabilities. The Office helped develop policies to ensure the state met the access needs of people with disabilities, and also served as the states coordinator for the implementation of Section 504 of the Federal Rehabilitation Act of 1973.

When a previous administration created the Justice Center for the Protection of People with Special Needs and consolidated the state offices, the vital policy and advocacy function that the Office of the Advocate provided did not survive. While there are state agencies that address individuals with specific diagnoses, there is no state agency charged with meeting the needs of the Disability Community at a systemic level. Large segments of the Disability Community are left without a state agency addressing their needs and representing their interests in state government.

Action:

Send a message to Governor Hochul

https://ilny.us/advocacy/action-alerts?vvsrc=%2fCampaigns%2f87900%2fRespond

 2/8/22 – Governor Hochul signs bill reinstating the NYS Office of the Advocate for People with Disabilities: A Victory for all disabled New Yorkers. Southern Tier Independence Center (STIC) extends many thanks and appreciation to Governor Hochul for recognizing the needs of the disability community by signing the bill, and responding to advocacy efforts by disabled individuals, advocates, and Senator Skoufis among others. After seeing former Governor Cuomo veto this bill and refuse to work with advocates, this was a ray of sunshine after 12 long cloudy Cuomo Administration years.We consider this a signal of good faith between the governor’s office and the disability community as a whole. There are no losers in this. Thank you Governor Hochul for working with us on this issue. We are pleased that a cooperative working relationship has been established, and we look forward to future endeavors.

1/27/22 – NEW YORK’S DISABILITY COMMUNITY STILL WAITING AS GOVERNOR HOCHUL HOLDS OFFICE OF THE ADVOCATE FOR PEOPLE WITH DISABILITIES BILL

Contact: Maria Dibble, (607) 724-2111, ext. 318

Governor Hochul has until February 4th to sign the legislation.

Governor Hochul has told disability advocates that the concerns of the disability community are a much higher priority in her administration than the previous one. She can demonstrate this commitment by signing A.3130 / S.1836 to reinstate the Office of the Advocate for People with Disabilities. The bills unanimously passed the New York State Assembly and Senate last year.

The Governor’s Executive Budget does set aside funding for three people to staff an Office of the Chief Disability Officer funded through the Office for People with Developmental Disabilities. However, there is nothing in writing to describe the structure and mission of this office. Governor Hochul should sign A.3130 / S.1836 instead, to ensure the office’s mission is in statute and that the advocacy functions in state government for all disabled people are restored.

There is currently no one office that oversees issues like ensuring compliance with the Americans with Disabilities Act (ADA), and as a result, there is nobody for people with disabilities to contact to resolve access and other issues they experience with the State. Governor Cuomo repeatedly enacted policies without considering the impact on people with disabilities. New York State now has a shameful legacy of litigation in recent years for not ensuring access, including during the early days of the COVID-19 pandemic when Governor Cuomo refused to have an ASL interpreter onscreen during his daily briefings, denying Deaf individuals an equal opportunity to benefit from the information. Signing A.3130/S.1836 would help to demonstrate to the disability community that the Hochul administration takes the concerns of people with disabilities seriously. If the Governor is not going to sign the bill, , she should clearly articulate an alternative plan, and meet with the disability community personally to discuss it. “

Maria Dibble, Executive Director of Southern Tier Independence Center (STIC) said, “We at STIC, on behalf of the thousands of people with disabilities we serve, strongly urge Governor Hochul to sign this important legislation, benefiting all disability groups, and empowering them by restoring their voice in state government.”

10/19/21 – Watch this powerful short film on the home care crisis and signed a petition calling for increased wages for home care workers in New York. 

Join STIC and take action!

Click here to watch the film and sign the petition

New York State is looking for your feedback! Please consider registering for Stakeholder meetings -coming in November! You can register for as many as you want but registration closes on October 24th. Additionally, the FACE center is running an informational session on October 26th to help you prepare.

Register for 10/26 at https://www.eventbrite.com/e/spp-preview-tickets-187725972437

Click here for Stake holder inviter letter

October is National Disability Employment Awareness month (NDEAM

The theme for National Disability Employment Awareness Month (NDEAM) 2021, “America’s Recovery: Powered by Inclusion,” reflects the importance of ensuring that people with disabilities have full access to employment and community involvement during the national recovery from the COVID-19 pandemic.

NDEAM is held each October to commemorate the many and varied contributions of people with disabilities to America’s workplaces and economy. Browse the U.S. Department of Labor’s website for ideas and resources for employers, community organizations, state and local governments, advocacy groups and schools to participate in celebrating NDEAM through events and activities centered around the theme of “America’s Recovery: Powered by Inclusion.”

STIC provides Supported Employment services to people with disabilities. See more information in the services section of our webpage. We are strongly committed to full integration of people with all types of disabilities into the workplace, and we are actively pushing a bill, A.3103/S.1828, which would end the practice of paying people with disabilities sub-minimum wage. The practice is unacceptable and must end!

10/12/21 – New York State Governor, Kathy Hochul, issued a proclamation declaring October 2021 as Disability Employment Awareness Month. Governor Hochul said that New York State is committed to ensuring working individuals with disabilities have equal opportunities and are supported in the work place. New York State has a long-standing commitment to supporting inclusive workplaces and innovative solutions to empower workers with disability to achieve financial independence through employment and decreasing unemployment and poverty for individuals with disability in our communities.

NYS Employment First

 National Disability Employment Proclamation

10/1/21 – STIC hosts Press Conference with Senator Kirsten Gillibrand in support of the Better Care Better Jobs bill currently in congress.

Click here to watch the video.

9/13/21 – September is National Preparedness Month, and FEMA has put together a webpage filled with information videos, and toolkits. Very timely, considering the deaths and damage due to Ida.

Click here for more information https://www.ready.gov/september

9/9/21 – Southern Tier Independence Center (STIC) Calls on Governor Hochul to Hire a Chief Disability Officer, and Sign A. 3130 / S.1836 Into Law, Reinstating the Office of the Advocate for People With Disabilities  

There is currently no one single office that represents people with all types of disabilities in New York State government. This year, the legislature recognized that people with disabilities need greater representation and passed A.3130 (Steck) / S.1836 (Skoufis) to reinstate the Office of the Advocate for People with Disabilities. This office was tasked with advising and assisting the governor in developing policies designed to help meet the needs of people with disabilities and served as the State’s coordinator for implementation of 504 and the Americans with Disabilities Act (ADA). But this office no longer exists and there is no office to represent the interests of people with disabilities in state government. Governor Hochul has an opportunity to break with the past and send a strong message to disabled New Yorkers that their needs and rights matter. 

Originally established by Governor Mario Cuomo through Executive Order, the Office of the Advocate was intended to provide a formal voice within state government for New Yorkers with disabilities. The Office helped develop policies to ensure the state met the access needs of people with disabilities, and also served as the states coordinator for the implementation of Section 504 of the Federal Rehabilitation Act of 1973.

When a previous administration created the Justice Center for the Protection of People with Special Needs and consolidated the state offices, the vital policy and advocacy function that the Office of the Advocate provided did not survive. While there are state agencies that address individuals with specific diagnoses, there is no state agency charged with meeting the needs of the Disability Community at a systemic level. Large segments of the Disability Community are left without a state agency addressing their needs and representing their interests in state government.