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.

2. 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.

3. 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.

4. 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.

5. 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.

6. 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