PA House Human Services — 2026-08-18

Good morning, everybody. I'm happy to be here. My name is Brenda Pugh. I'm the state representative of the 120th District located in Luzerne County.

Good morning. I'm John Schlegel.

Thank you, Chair Heffley. Is anybody online that we might be missing?

Representative Bellman from Philadelphia County.

representative Jessica

Rep Rivera

Nikki Rivera Lancaster House District 96

and representative Jim Prokopiak 140th district Bucks County

Thank you, Chairman Williams. Thanks for scheduling this public hearing. And I want to also thank representatives Ortitai and Benham for their collaboration on this issue. We want to ensure that individuals with disabilities have timely access to high-quality services by dedicated professionals. And we must also ensure that the providers can sustain their operations while maintaining sufficient time and resources to focus on the individuals that they serve As we hear from today testifiers I look forward to gaining a clearer understanding of the current rate-setting process and how this legislation may impact providers, families, and individuals who rely on these services. I sincerely hope that we can identify practical solutions that best support individuals with disabilities.

Well, thank you, Chair Williams and Chair Hefley and members of the committee for the opportunity to hold this hearing on House Bill 1939. It's been wonderful to work with Rep. Ortizai on this bill, and I know he regrets not being able to be here today. He had another committee meeting that he had already committed to. I introduced HB1939 because we have a system that too often asks providers, direct support professionals, individuals with disabilities, and their families to absorb the rising cost of delivering services without a predictable way to account for those increases. Today, Pennsylvania's IDA rates are comprehensively reviewed every three years. But the costs of providing care don't wait three years to go up. Neither do the cost of groceries, health insurance, transportation, or retaining a qualified workforce. And when our rates and wages fall behind, the consequences are significant. Providers struggle to fill positions. DSPs leave for better-paying jobs. and people with intellectual disabilities and autism can end up waiting for services or losing the consistency and relationships that are so important to their lives. HB 1939 is about creating greater predictability in the system. An annual inflationary adjustment gives the Commonwealth providers and the workforce a clearer plan for the future. I look forward to hearing from our witnesses today and especially to identifying where we can strengthen this legislation so that we can build a more stable workforce and ensure that Pennsylvanians with IDA can actually access the services they've been promised. So thank you all.

Yeah, very good. Good morning. Good morning, Chair Williams, Chair Hefley. And I appreciate the opportunity to join you this morning to talk about HB 1939 and appreciate the introduction of it by Jessica Benham. Let me start with a little background on the people that we're talking about and some of the context in the system, our providers, and then the history of rate setting. To start this conversation this morning, I would be remiss to not start with situating us at a pretty critical juncture in terms of home and community-based services in our country. On July 20th, the Department of Justice, Federal Department of Justice, issued a notice that they were essentially rescinding the Olmstead guidance And the Olmstead guidance for people who aren familiar with it was longstanding legal precedent that essentially enforced the rights of people with disabilities This was a longstanding interpretation of the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, the corresponding regulations, and then the Olmstead decision by the Supreme Court. The Olmstead guidance really represented overwhelming consensus for decades on the enforcement of those laws as they relate to disability rights. With the rescission of this, the Department of Justice essentially said, we don't believe that we will not be using the Olmstead guidance in terms of enforcing the rights for people with disabilities. And at the core of this, what that right is, is that people have the opportunity to receive their publicly funded services in the most integrated setting. And so as we're talking here today about home and community-based services, this is a really critical part of the conversation. ODP is hearing many concerns from individuals and families about what this means in terms of the future of home and community-based services. People have expressed concerns to us that their loved one, their son, their daughter, their brother, their sister, will no longer be able to receive the services that they receive in their private home or in their licensed home that is overseen by the Office of Developmental Programs. And so hopefully everyone has seen by now, the governor did issue a letter last week to disability rights organizations just reaffirming Pennsylvania's commitment to protecting and preserving the right for people to receive home and community-based services. the really the most durable path for the commonwealth to preserve and protect home and community-based services and the right to live in the most integrated setting is what we're talking about today. It is the continued investment in home and community-based services. And under the Shapiro administration, we have a really great track record of doing that so far with support of the General Assembly. As many of you know, in 2024, the governor announced the multi-year program growth strategy to end the emergency waiting list for adults. Just since February of 2024, we have reduced that emergency waiting list by 39%. In Pennsylvania, we can proudly say that for older Pennsylvanians and people with physical disabilities, 78% of those individuals are served in their own homes, not in nursing facilities. they are receiving that care in home and community-based settings. So this is all to say that the timing of this hearing, you timed it impeccably, because I think there's a huge national conversation happening right now about the future of home and community-based services. So that's the kind of context we're having this conversation in. Let me tell you a little bit about the people. And so in terms of Pennsylvanians with intellectual disabilities and autism ODP currently has 62 people of all ages registered for services 42 of them receive services through one of our four home and community waivers and those are exactly the rates that we are talking about today that will be governed under HB 1939. The people who come to us for support all meet what is called the level of care for an intermediate care facility. And to translate this, it essentially means that anyone who comes to us not only has to have a diagnosis of an intellectual disability or autism, they also need to have at least three areas where they need substantial amounts of assistance. Things like self-care, communication, home living, interpersonal skills, self-direction, functional academic skills, work, leisure, health, safety. Again, to sort of break that down, it means that the people that come to us for services need, most of those people need support most of the time. And when I say that, it really is a continuum. Again, it's all ages, and we have people who can, you know, they're okay with a little bit of support. Many of the people that come to us need significant amounts of interdisciplinary support. So you have a dietician working with an occupational therapist or a physical therapist. You've got a behavior consultant working with a psychologist or a psychiatrist. And then you also have direct support professionals, which is really the core of what we're talking about here today. People that come to us for support typically need that service lifelong. They are life-sustaining services. And they are essential in terms of supporting people with health, safety, integration, all of those key aspects. So that's the people that come to us for support. In terms of the provider community that supports individuals with intellectual disabilities and autism, we currently have about 1,500 enrolled service providers. Those are Medicaid-enrolled service providers with the Office of Developmental Programs. They are generally paid on fee schedule, meaning those rates are developed with the support of our actuary. We currently publish a rate. We have about 40 different services. Each of those services also, because we serve a whole continuum of people, is broken down into sort of levels of support. So there are services where you may have one DSP to three people, or you may have two DSPs, one of them a nurse, with one person, right? So really accounting for the full continuum. We work through all of those rates with our actuary and publish all of those. And at the core of this is really that direct support professional. That is really where the work happens. And what I want to share with you, because I haven't really found anyone who has articulated this better, and I apologize, you probably get read to more often than you like. I'm just going to read one short passage describing the role of a direct support professional, because I think it is often understated, the complexity of of the work that they do and the importance of the work that they do. And I don't think anyone says it better than the National Alliance of Direct Support Professionals. So this is also in the testimony, if you'd like to read along. So DSPs assist people with intellectual or developmental disabilities in realizing their full potential and becoming valued and participating members of their communities. Their work is complex and goes well beyond caregiving, requiring skills including independent problem-solving, decision making, behavioral assessment and prevention, medication administration, health and allied health treatment, teaching new skills, crisis prevention, and intervention, and more. The job duties of a DSP may resemble those of teachers, nurses, social workers, counselors, physical or occupational therapists, dieticians, chauffeurs, personal trainers, and others. Their work requires strong communication skills and the ability to build relationships with the people they support and families. So again, I don't think anyone says that better. And when we work through the rate setting process, when we are doing, you know, establishing new training requirements, all of it, there is a profound understanding of the depth and scope of work that we ask people to do every day. So I provide all of this context because I think that's where we have to stay grounded in having these conversations in, you know, ODP's system, our home and community-based services are $6.2 billion annually. The vast majority of that is paid through these fee schedules. And I think that we have to be centering those individuals that come to us for support and those DSPs when we're having these conversations. So a little bit of the history of our rates. Until 2019, when ODP promulgated the 6100 regulations, we did not have any kind of rigorous routine schedule for reevaluating our rates. And what the 6100 regulations did, there's a whole section of them, 571, that outlines and prescribes to the department how we are going to establish rates, publish them, including, very importantly, which I think will be a large part of this discussion, that at a minimum of every three years, we need to reevaluate the data that is used to establish our rates. And so that prescribed process means that we are going to review data, data sources. We are going to review each of those 40 service definitions, all of the different levels of care I just described. and we are going to look at allowable costs for each one of those. And we do that all in concert with our actuary. So the point of this is to make sure that we are reflecting costs for delivery of each of those services uniquely that are reasonable, necessary, and related to the service. So we use various independent data sources. One of the primary data sources that we use is the Pennsylvania specific compensation survey from the Bureau of Labor Statistics. And then in that rate setting process, we go through and evaluate data and we look at service needs of individuals We look at staff wages we look at staff related expenses we look at productivity how much and this varies quite a bit by service how much time that a provider is providing is actually billable because it's not all billable there are things like transportation for supports coordinators we don't allow billing you know if someone is on the road that is not a billable unit of service. Occupancy, other program and other administrative related costs, we look at geographic costs based on where the service is delivered as another one. And then we take into account all of the very many state and federal rules and regulations that our provider community is subject to and the cost of that. So a really clear example of that is ODP has very extensive training requirements for DSPs, which means you are pulling someone out of complement, paying for their time, paying for certain training, credentialing, et cetera. So we do take a look at all of that when we are establishing rates and making those rate assumptions. One of the things that I think is really important to note is that direct support professionals do not have, there is no federal standard occupational classification for a direct support professional. And certainly people in this room have advocated for that at a federal level with the Bureau of Labor Statistics to add that. So the way that ODP pulls and uses data to establish wages is by looking at comparable occupations and then taking all the sort of relevant occupational classifications for each service and compiling that to come up with the wage assumptions that we use. And then we build out these fee schedules that are intended to fund services at a level sufficient to make sure that we've got provider participation such that people can access those services and that we are promoting provider choice so that we have more than one provider for people to choose from. So that's the rate setting process. process. The three-year cycle, I think, for those of you that have been in the General Assembly for some time, you may recognize that that three-year cycle creates what I think is fair to call some sticker shock when it is time for our rates, that data, to be refreshed and for a budget request related to the rate-setting process. And I'll just give you since, you know, 2017, again, prior to that, there really wasn't any routine, rigorous rate-setting process. $249 million in that year from state budget. 2021, $400 million for rate increases. This is state and federal combined. 2024, it was $280 million in state and federal. And given the rate factors that I just walked through, of course, right, I think, you know, Representative Benham said it very clearly, these costs continue on, and of course they are then reflected when we're pulling current data to refresh the data that's established the rates because we are setting them in line with market forces. so another important thing to understand about rate setting is that the direct support professional that work is by far the largest portion of the rate any rate assumption really Most rates you're going to see about 80% or more of the rate is made up by the wages for the direct support professional. And those wages, we do see them. If you look at provider surveys, The provider associations do a combined compensation survey every year, and providers, on average, you can see that they are passing along increases to DSPs. So in terms of the position on the department's position on HB 1939, in order for, you may have heard, our longtime vision for the Office of Developmental Programs, this is more than a 30-year-old vision, and I feel very blessed as the leader of ODP to have a two-word mission and vision, which is everyday lives. It really always centers us in terms of the work that we need to be doing. Our job is to help people with intellectual disabilities and autism live lives in work, play, and communities just like any other Pennsylvanian. And so, as you know, I hope I've done justice to you this morning, and that work really is reliant on the direct support professionals. They are the ones doing that work, supporting people every day to do it. now ODP sets rates we don't set wages we don't establish wages just rates and as I noted providers tend to pass those along we have rate wage assumptions in our in our published rate assumptions but we do not dictate any wages and it is why you see some distinctions you know most providers passing along rate increases, but we do have some providers where you can see that that is lagging. So the department is supportive of 1939 because it does four things. One, the kind of predictability that was mentioned earlier. In HB 1939, as it is constructed right now, So the rate would increase rates in line with a consumer price index to the extent that appropriations are available. And so from a provider standpoint, and again, I think Representative Benham articulated this, having the predictability as a business to know that you've got the funding to do X, Y, or Z in terms of improvements in your IT systems that you can predictably give DSPs, put them on wage increase, you know, on a schedule for that, is really important in terms of providers running businesses with some predictability. Most of our providers, this is a single-payer business. Like 99% of IDA services are funded through Medicaid. And so to have this three-year cycle certainly creates some pain points for our providers. In terms of the department, in terms of the General Assembly, you know, having some predictability instead of the sticker shock of that three-year rate refresh certainly also provides some greater predictability. Second thing so the first one is the predictability that comes with having those in line with a consumer price index to the extent appropriations are available Second one is that we would continue to do that three work because we don't ever want to get, have our rates become disconnected from what's happening in the market. And I think the clearest example of this, again, we have 40 different types of services, And one of the things that we saw during the pandemic is wages of nurses went way up, right? So to just do the same percentage across all rates is not going to account for services that are entirely nursing or that have a huge nursing component in them. that that three-year data refresh that we would do would make sure that we were picking up on any of those disparate movements within those market-based rates. Another is transportation. So let's say transportation costs continue to drive up at a rate higher than wages. then we would be able to make that adjustment for services that were more heavily reliant on transportation. All right, so the third thing, third reason that the department is supportive of HB 1939 is that it ensures that the rate increases flow through to our critical workforce. so there are the as constructed hb 1939 includes some guardrails to make sure that the any increase is passed along to those direct support professionals currently attached to the lower bound wage assumption that we publish and it also includes if it's ever necessary the ability for the department to enforce that. And then the fourth area, in terms of the department being supportive of 1939, is that it offers some transparency. So one of the things that we currently do not have much of is transparency into how the rates are translating at a more granular level to direct support professionals. And so I think in terms of stakeholders, in terms of the General Assembly, in terms of the department, a greater level of transparency would certainly be welcome. The way that the language is currently written, it also eliminates any duplication for a federal regulation that will be effective in July of 2028. So as part of the federal access rule, providers will be required to report direct support professional wages and compensation through the access rule. We will, the Commonwealth will need to comply with that by July of 2028. the way the language is written here it's constructed so that it would be singular reporting that would meet both those federal requirements and these requirements here so in conclusion the department is supportive of the bill because it will assist with the predictability of our budget and our system it assists with the sustainability of our system in terms of maintaining that workforce and the providers having a little more sound footing for their business models, and then it also offers the much-needed transparency. Thank you. I'm happy to take questions.

Representative Benham? Thank you, Chair. Deputy Secretary, I appreciate that DHS supports the bill as written. I think you're familiar with some of the technical concerns raised by the provider, associations and I'm wondering which of those if any you believe should be addressed through amendments to the bill. So I think one of the things that the associations shared with me is there's some concern that the way that the language reads that providers would be held accountable to pass on the percentage of the consumer price index, regardless of whether that's the same percentage that is actually applied, is appropriated and then applied. So, for example, if the change in the consumer price index is 3% for the 12-month period that we look at, the General Assembly only appropriates 2%. There is concern that they would have to apply 3% increases to their DSPs. That was certainly not the intention, that's not the department's intention in interpreting any of the language. So I think if language needs to be revised to make that clear, I think the department would be supportive of that.

Good morning. Thank you so much for your testimony. As noted, the rates are required to be reviewed every three years. Is that on? Is this the mic on? Yeah, okay. It appears the rates are determined in October and then implemented in January. And given our recent issues with setting our budget here in the state, do you think that that timeline is appropriate based on recent history of the legislature's ability to pass the budget?

Would these new rates be appealable by a provider? And if so, when would that happen?

Okay thank you Representative Pugh Thank you Yes thank you Good morning So I appreciate the work that being done on this bill I see an increase in autism inside of my district itself. But I do have a question I'm curious about. What about the senior in home care? Is this compatible to what they get paid to take care of our seniors inside of their homes?

Okay. I just don't want to see a tug and pull, especially when it comes to nursing staff in between agencies due to salaries, because we see that in other industries across the state.

Chair Hefley.

So certainly if asked, the department could provide. It's an actuarial term, but that doesn't necessarily translate. But we could certainly provide a definition for lower bound for the committee's purposes when we are working with our actuary and they're looking at bureau of labor statistics data they look at the range of wages and what percentile of dsp you know in this case dsps fall into each percentile of wage from low to high so we publish in our assumptions what we that low bound is and the upper bound. And then we set our rates within that. But that's what the term refers to. But certainly we could assist with language for a definition.

We're not saying all of it has to. The bill isn't constructed to say all of it has to go to the DSP, just that percentile. So the percentile does apply to the entire rate the way this is constructed.

So it's the NADSP that does the credentialing. Is that the only organization that providers have to contract with to do the credentialing? or are there other providers that can do the credentialing?

So if you recall, we do the performance-based contracting for residential providers. For the higher performer, the advanced tiers of that, they are required to have higher percentages of staff that are credentialed either through the National Alliance of Direct Support Professionals or the National Association for Dual Diagnosis. So there are two options for them. The other residential providers beginning this year now have a requirement for the credentialing through the National Alliance of Direct Support Professionals. There really aren't, in terms of credentialing that is specific to the intellectual developmental disability field, there aren't many nationally recognized credentials. So those are the requirements. For the other providers, they are encouraged, and we have put out some funding to incentivize credentialing, but there is no current requirement. Thank you.

My pleasure.

Chairman Williams, Chairman Hefley and members of the House Human Services Committee, thank you for the opportunity to testify today My name is Patrick D and I serve as Executive Director of the Provider Alliance an association representing community providers of intellectual disability and autism services across Pennsylvania. I want to thank Representatives Jessica Benham and Jason Ortitai for their leadership on House Bill 1939 and members of both parties, the Shapiro Administration and the Department of Human Services, for engaging seriously in this discussion. I spent my career working in and around Pennsylvania's intellectual disability system, but I began this work as a direct support professional. So before I knew anything about rate methodologies, Medicaid waivers, or the consumer price index, I knew this system through the people we support. I knew what it meant to show up every day and be responsible for helping another person. And I learned something then that remains true today. Our policies ultimately matter only to the extent that they make it possible for people to receive the support they need. Our Governor and General Assembly have consistently affirmed our Commonwealth's commitment to the IDA community. We have built a system around community living and the rights, freedom and independence of people with disabilities. And we have invested in that system to preserve dignity, choice and the opportunity to live and be served in the community. The vision is right and the commitment is clear. But we have to ask ourselves a practical question. How do we realize that vision without a structure capable of sustaining the services that make it possible? That is the problem House Bill 1939 is trying to solve. As the Deputy Secretary noted, our rate-setting regulation requires the Department to update the data used to established reimbursement rates at least every three years. does not require anything in between those cycles. Meanwhile, wages rise all around us. Health insurance costs increase. Food, transportation, housing, utilities, supplies, training, all of these costs change every year. But the people we serve do not need support once every three years. They need it every day and they need it throughout their lifetimes. The results of this mismatch are evident in our workforce. Our most recent Pennsylvania workforce study found its 41% annual DSP turnover rate and 18.2% of DSP positions vacant. Those are not abstract statistics. A vacancy means someone isn't there. Turnover means someone who developed a relationship with a person and learned how that person communicates, what frightens them, what makes them laugh, how they want to spend their day is gone, and somebody else has to begin again. It creates extraordinary strain on our DSP workforce. It means families filling gaps. It means providers unable to accept new people into services. And ultimately, it means people waiting for services Pennsylvania has said it wants them to receive. The Governor and General Assembly have made an important investment in the multi-year program growth strategy with the goal of eliminating the adult emergency waiting list. But we cannot eliminate the waiting list simply by authorizing services. We have to create the capacity to provide them. That means workforce. It means providers. It means access to technology. It means innovation to find new and better ways to support people. And it means a reimbursement structure that allows all of these things to evolve and endure. That is why House Bill 1939 is good public policy. It is not a substitute for the budget process. It does not eliminate the Department's comprehensive rate setting responsibility, and it does not guarantee unlimited annual increases. It establishes something very basic, an annual framework for recognizing economic reality. The people who rely upon this system deserve better than a funding crisis, so persistent that it has become a permanent condition. And there is another important fiscal reason to do this. State investment in eligible home and community-based services draws substantial federal matching funds. In the current fiscal year, federal participation will cover over 57% of eligible Medicaid expenditures. When Pennsylvania invests in this system, we leverage dollars to strengthen and stabilize services here at home. House Bill 1939 would establish predictability, and predictability matters. It gives us a chance to build capacity instead of merely trying to preserve what remains. And it gives individuals and families something our current rate policy cannot reliably provide. Peace of mind that the services they depend upon today will still be there tomorrow. This is not fundamentally a provider issue. This is an access to services issue. The fee schedule addressed by this legislation funds the community services upon which tens of thousands of Pennsylvanians with IDA rely today and through which many of the people now waiting for services will ultimately receive support. The policy and methodology used to determine these rates are therefore inseparable from the sustainability of Pennsylvania's community IDA system. There are provisions in the bill that should be refined and opportunities to make it stronger, and I have addressed those recommendations in my written testimony. But those issues should be addressed through the legislative process and not be allowed to obscure the fundamental policy question before us. Do we believe Pennsylvania should have a predictable mechanism for sustaining the community IDA system from one year to the next? The answer is yes. And Pennsylvania would not be alone. Other states have recognized the same structural problem. Approaches differ, but the principle is the same. The cost of providing lifelong services changes over time. A sustainable reimbursement policy should recognize that reality. We are living through a period of considerable uncertainty. Long established principles of community inclusion are being questioned at the federal level, presenting very real threats to the freedom and independence of people with disabilities. Pennsylvania does not have to wait and see what happens elsewhere. We have an opportunity to act right now. We cannot promise people freedom and choice without ensuring that the service is necessary to exercise them exist. We cannot eliminate a waiting list by funding people to enter a system that lacks the capacity to serve them. And we cannot build that capacity while allowing the purchasing power of rates to erode between periodic rate reviews. Creating a community service system without sustaining it is another way of denying the promise it was created to fulfill. That is why House Bill 1939 matters. It gives Pennsylvania an opportunity to make sustainable IDA funding a matter of policy rather than a periodic response to crisis, to establish an annual framework designed to sustain the infrastructure upon which our vision depends. Pennsylvania has articulated the vision and invested in it. But a vision requires more than commitment to be realized. It requires a sound plan to execute that vision and a structure capable of sustaining its success I respectfully ask this committee to advance this bill and to continue working with all of us to make it as strong and effective as possible Thank you

Chairman Heffley, Chairman Williams. Thank you, Rep. Benham, for your leadership on this bill. So I've been advocating in this space for over a decade now, and this is really the first time that I think the Human Services Committee has given us a platform and opportunity to consider legislation like this. And that doesn't go unnoticed, and we appreciate the opportunity to come and work towards a product that works for all the stakeholders in the system. We have a very diverse group of stakeholders. We work closely with our partner associations. There are others that are also included in our conversations. We all have varying points of view on a lot of different policies, and so it's important for us to all kind of have the opportunity to talk about specific issues that may occur with the bill and other policies as they are. So I'm not going to read my testimony. I do want to focus on a couple things that both Patrick and Deputy Secretary Kristen Ahrens shared and just highlight some of those points from the provider perspective. I'd first like to start with the statement that PAR has been advocating and fully supports any action that would lead to annual increases for our DSPs. A decade ago, as outlined, our rate-setting process, there really wasn't one. It was at the whim and mercy of the legislature and the administration at the time. Until the Chapter 6100 regs were promulgated, there was no process. The three-year rate update, data update, rate refresh, it's been called a lot of different things, has resulted in more stability in our system. But there's still flaws in how that system is implemented. I like to use PAR and our partners. We do an annual wage study where we look at the data from our members and see what they're paying their staff on average, what their vacancy rate is, and what their turnover rate is. So we have data that dates back decades. And we have seen consistently providers' commitment to investing in DSP wages, even in years where we do not receive additional funding for rates from the state. And I think that speaks to the commitment that our members have to investing in the only reason that I think, you know, there are providers still around. It's the work and effort of the DSPs. And so this past year when we completed our review, our survey, we had over 20,000 DSPs represented in the survey, which is about 40% of the total workforce that we estimate in our system. We found that on average, as Patrick said, around 41% of providers were experiencing 40% turnover in their workforce. And what that truly means is that between each data update or rate increase, what you're actually seeing is if 40% of our workforce is turning over each year, by the time the rates get updated, you've potentially completely turned over the entire workforce of 50,000 DSPs. And so in a three period if a provider is spending to in a conservative cost to turnover an employee you talking about to million that providers are then spending just on the consistent recruitment and retention of staff who are coming and going And that's why I think the annual increase and the pursuit of annual wage increases is so important for our system because it's not just about giving the DSPs a well-deserved raise.

Thank you, Chair. Patrick and Nick, you've both identified areas where you believe that the bill should be amended or clarified. If you could each prioritize just one to two of the changes you mentioned, which ones from your perspective are the absolute most important changes? that you would like to see to the bill.

If you don't mind, I'll be brief. We highlighted four, and they're somewhat combined. So some of the things we've already talked about. So to be very expressly clear that the pass-through, it is available for other things other than DSP wage. That has been misinterpreted, that it has to all go to DSPs. We've heard that a lot. So even though it does not expressly say that, I think to make abundantly clear that it does go to all elements we've talked about here today that are affected very much by inflation. The pass-through to DSP, that's already been talked about. The deputy herself addressed that. It does literally say that you have to give CPI to DSP workforce, but it doesn't guarantee that providers of the rates will actually reflect that. So there's clearly just a disparity in terms of that language to clarify that. So I think that to use the process that is going to be retained under regulation, we also highlighted we don't want that to turn into a clawback opportunity where things that have been increased over, say, the previous two years are then re-evaluated and then that is erased. So if there's inflation and it's been built into the rates and then a review occurs and all these things we talked about about lack of transparency produce something that is then less than that rate we want to make sure that that rate is preserved at that level But I think most importantly the penalty provision should be removed It ties into all of these things We talked about lower bound rate There's no transparency around that at all. Quite honestly, this is a fee-for-service reimbursement model. So this is not something where it is cost or cost plus or it is interim rate with cost reconciliation. The Commonwealth establishes a fee that it determines to be market-oriented that should attract business, and there's not really supposed to be this dive down into the auditable costs of provider organizations. So we've talked around that issue quite a bit. At the end of the day, these wage ranges that are in these Mercer assumptions, they don't really tie to anything because individuals are being reimbursed at a single fee. So that service for every provider, the 1,500 providers that the deputy secretary mentioned, there isn't a wage range that's embedded individual fees for services to people. So to penalize people within a bill that's intended to elevate and sustain the system just seems to be counterproductive. Also, the Deputy Secretary mentioned twice in her testimony that the data supports that the provider community does indeed pass through wages. And Nick said this himself. Even in years where there is not an increase, we see wages tick up, and we have the data to demonstrate that. And we know the department is well aware of the data. The final provision, the repository for the penalties is the IDA augmentation account. That augmentation account was created to capture savings from state centers, not to be a repository for provider penalties. So we've called these things out in the written testimony. Sorry if that's a little too detailed and lengthy, but those are really the elements that we feel that we do address as clarifications, as opportunities for improvement, as technical provisions that should be addressed in the legislative process. At its core, the bill does do what it needs to do as an investment in our system. But those are the elements we think are most important to be addressed as this goes to markup and proceeds. And I'll just echo the – for us, it's really low ground wage rate. And I'll give you an example. I know that the state has been discussing increasing the minimum wage to $15 an hour for a long time. about a decade ago when the state kind of elevated contracted employees, state contracted employees to $15 an hour. We were not included in that. Even though the department at the time made the argument that the rate range supported a $15 an hour wage, we had data at the time that had our average DSPs making less than $15 an hour. So in the past, we've seen administrations use kind of this wage range as sort of like, well, you should be paying this when we have the data that has demonstrated that our providers aren't kind of able to meet what the rates are saying we should be able to meet. Thank you.

Representative Pugh. Again, thank you. Thank you for being here today. Now I have a question, and it's something I don't know, but it may be very, very common. When it comes to the cost of living and you're going to set the flat rate, is it going to be the same rate for, say, a Pringleboro in my area versus Philadelphia versus Erie, or are they all going to be different wages? Do you know how that's covered in this bill?

Is there any suggestions that you have as far as the billing process that would make it easier for the facilities that are actually doing this work? I know a lot of places in my area are bogged down with paperwork. Yeah, I think that's kind of the $100 million question, I think,

Thank you. I appreciate that. And I'm seeing that across a lot of industries is the paperwork. They're having to hire somebody just to do that as opposed to what their mission is. So thank you.

Thank you, Chairman Heffley and Williams, for the opportunity to share my family story today. You've heard a lot about rates and CPI and a lot of technical information.

Better now?

Okay. Thank you for the opportunity to share my family story today. I am not one to be providing you a lot of technical detail. I think you've heard enough of that today. my job is to give the human element to this crisis that we have and it really is quite a crisis and I feel no better way to put the face of that service and the impact that it has on individuals than to show you a picture of my handsome son I by the way I live in Washington County and I am in representative or T ties district so thanks to the representative and you Jessica for introducing this bill. So that is my 24-year-old son Colin. Pretty good-looking guy, right? Nice winning smile. Doing something that he really loves the most which is taking a hike on the Montour Trail which is near where we live. He is 24 years old and in addition to those good looks he is significantly impacted by symptoms of profound autism. Clinicians call that level 3 autism. It is the highest support needs category in the current DSM-5 manual for diagnosis. He He has several co mental health conditions very limited spoken language and significant self behaviors At times those self behaviors are very extreme when he dysregulated unsupported, has a lot of time to languish and not have anything to do. Sometimes he will hit his face, kick a body part, maybe slam his body into a wall or a door causing damage to himself and my home, sometimes as much as 100 times a day. So very high support needs individual. He needs significant support from qualified, qualified, and I do say qualified, and you've got to pay qualified people quite well, right? To accomplish even the most basic tasks of daily living, showering, tooth brushing, preparing a simple meal or snack. He is an avid lover of the outdoors. He has an eclectic taste in music. You ought to see his playlist. It's pretty impressive. And he enjoys being around people. He's had an intellectual disability an autism waiver through the office of developmental programs for almost half of his young life about 12 years now and that's primarily due to the high support needs that he has soon after colin left the school system and that's about four years ago now he received a bump up to what odp calls the consolidated waiver if you're not familiar with that that is a waiver that has no dollar cap on the services and supports that the individual needs when you get that waiver you feel like you've won the lottery you know charlie in the chocolate factory running around with a golden ticket right because it seems like you're set your son or daughter should get the uh services that they need to thrive but sadly that's really not the case for a lot of people especially those who have children with complex needs like my son and really the reason is our workforce crisis right um the it you know there are many people in my shoes across the state. In the four years that Colin has graduated from the Cannon-McMillan School District in Washington County, he's essentially graduated to the family couch. For most of the last four years he sat on what we call the hidden waiting list. He's got a great individualized support plan. He has obviously a clear and demonstrated need and he has the funding available to fund the services to address those needs, but there is no staff to support him. When families do get lucky and find a provider that's willing and able to staff their child's case, often they don't last long. You've heard the statistic 41% turnover rate a couple of times today. Our experience can absolutely endorse that. Sometimes I feel like I have needed a revolving door on my home because that's how many people come in and out of our lives on a pretty regular basis. And primarily that's because this is a tough individual to support and you need to have the skills, the training, and yes, the compensation to do it well. Since leaving high school four years ago, Colin has experienced a significant increase in problematic behaviors, such as self-injury and aggression. That has resulted in at least one lengthy, I can remember, lengthy stay in the Western Psychiatric Hospital in Pittsburgh, and that is quite a costly endeavor there. his mental health has worsened and his level of social isolation his experience is displayed for you right there on the screen that's the kind of thing that breaks a mother's heart particularly when you have a son that really enjoys being around people especially his peers why are we in this situation when we have this no dollar cap waiver that should be providing my son the support he needs and really in a word it's the workforce crisis you've heard about so much today. This is hard work and ask our DSP who will share her testimony in just a moment but ask any parent who's forced to fill the gaps when agency after agency tells us they do not have the staff to support an individual like your son or daughter. Some of the waiting lists for some of these programs are years long. I've looked at day programs referred to in the system as CPS, Community Participation Support. I've looked at day programs now for about three or four years. One of the programs is about a 10-minute drive from my home in Bridgeville. It would be perfect They have a 70-person wait list, and that's for individuals who can handle a 3-to-1 staffing ratio, as opposed to my son who needs a 1-to-1 direct support professional. So we have to do better, because many of our vulnerable Pennsylvanians are languishing in the homes of their aging caregivers, losing the skills they worked very hard to acquire in their special education programs in school, and experiencing profound isolation, as that photo demonstrates quite well. As family caregivers age, the intense 24-7 caregiving that was extremely challenging when we were younger and healthier becomes much more difficult, almost impossible in some cases. Like many parents of disabled adult children across the commonwealth, I know that paying DSPs a wage that is adjusted to inflation as this house bill will provide a path towards makes a lot of sense. But it's also not the only thing that we need to stabilize and improve the quality of this workforce. But providing a pathway for providers to adequately compensate DSPs so that they remain financially stable and can show up to do the important work for individuals like Colin is an essential part of the equation. Thank you for your time.

Good morning, my name is Zena Ezekiel and I'm a direct support professional with Envisioning Human Services. And I would like to thank Chairman Williams, Chairman Huffley, and members of the House of Human Services for this opportunity to provide my testimony on the House Bill 1939. I'm here today to just talk about the life of a DSP and I'm also a mom of five children. Two are biological and three are adopted. Two of my children are also intellectually disabled. And this House Bill 1939 is very important to me for two reasons, as a mother and also as a staff member. As a DSP, I know that this bill will help agencies financially and make it possible to hire and retain better staff. This will lead to more consistent staff and better care, longer term staff and relationships and less turnover. I truly enjoy my job. Honestly, I do. But it is very difficult to make ends meet on these wages. I currently work one full-time job and two part-time jobs just to provide the necessities for my family. Many days I have thought of walking away because I am struggling and have nowhere to turn. The turnover is high and the pay is low. As a parent whose two children have intellectual disabilities and now adults, I struggle finding reliable staff to provide care for them. I'm also my daughter who has a support coordinator and counselors change often without notice or warning. She has given up hope of ever getting services. The bill will help improve quality of life for everyone, staff, individuals receiving services, and agencies. The end goal should be quality of services I have one question When did working in a warehouse or picking up trash become more valuable than caring for a human life I ask this question not to undermine these jobs but because most of these positions pay more than DSPs are paid. When I think about walking away from this profession, I think about the person I have supported for 16 years, and I can't do it. Last year, we took him to Walt Disney, and it's the first time he's been on vacation since he was nine years old. And when we were in Walt Disney, you think about that, he's 54, so that's the first time he's been on vacation in 46 years. We met someone from Johnstown, and she said she couldn't believe we took him out of his wheelchair and put him on a ride. She said, why would you do that? Why wouldn't we? looked at us in Walt Disney and was like, they clapped. It was like we were doing the impossible. I was like, that is our job. That's what we get paid to do. We're supposed to. He's human. You shouldn't expect anything less. And she said when she takes, she was there with her intellectually disabled daughter, granddaughter. And she said no one had ever helped her, assisted her, even thought about acknowledging her granddaughter in Walt Disney. We helped her put our granddaughter on the ride. Her granddaughter went to hug me. She told her granddaughter, don't touch me. I said, no, ma'am, she can hug me. Absolutely your granddaughter can hug me. She said, I can't believe you would allow my granddaughter to do that. I said, why wouldn't I? And it's a shame when it's come to that that human touch is no longer allowed because someone is disabled. Or that's not fair at all. We have lost human touch for people. DSPs cannot make it at all. And it's sad that we cannot make it. We have to choose between your lights and buying groceries. There's very, very, there's something wrong here. The relationships, despite all the challenges and hardships, has made it all worthwhile. HB1939 is a bill that will improve many facets of life for the individuals we serve. It will help them continue to live in their communities, go to work, receive support from reliable staff, build meaningful relationships, and maximize their potentials. Staff members are all some individuals have. So when staffing feels like a revolving door, it is very difficult for them. Staff changes can lead to behavioral challenges, abandonment, concerns, and feelings of hopelessness. Because every staff person they like or get to know, get to know, sorry. Staff changes can lead to behavioral challenges, abandonment concerns, and feelings of hopelessness, because every staff person they like or get to know eventually leaves. With this bill, I am hopeful that agencies will be able to hire staff who will stay and provide the best person-centered care possible so individuals can live their lives to the fullest. When I came with my individual, he transitioned from Hamburg State Center because it was closing, and he went to Envision. And my goal was just to stay with him for one year because we went from Hamburg to Envision. And I said okay this is further for me because I coming from Allentown going all the way to Hamburg Now I going all the way to Redding which is another 15 minutes more for How Eight years later I still there this is hard 2022 i had two breast surgeries 2023 i had another breast surgery 2025 i had bladder surgery only can stay out the bare minimum i had to return to work this year i've had another surgery how can people keep surviving like this It's inhumane. I'm scheduled for another surgery, September 18th. Never miss a day of work. It's just fear to people. I had to do the NADSP program. certified level three just to make it? Is this fear? People provide the best care they can possibly provide for people every day. Is it fear? It's not. My guy is tube fed. We have to get special training to tube feed him. And we get up every day and we do it. And I would do it every single day. And not ever question it. Never question it. Next October we're going to Tennessee. And I would do it every day without batting an eye. But how can people continue to do this type of work and make the bare minimum? Is it fair? It's absolutely not. This lady is struggling. Her son is struggling. Every single day. Why? Colin does not deserve that at all. From a DSP standpoint, we do not deserve it. Yeah.

Representative Benham. Thanks, Chair. You know I always have questions. So I have a question for each of you. Ms. Bowen, we'll start with you. You described having funding and a waiver but still being able to not find a provider because there aren enough staff We can obviously see the impact in the photos you showed and the stories you shared But if the workforce was more stable, how would you describe the impact that that would have on Colin's life?

Thank you. It's certainly not lost on me the impact that this has, particularly on the lives of women, right? When we look at the two of you testifying today, Ms. Ezekiel, you're working one full-time job and two part-time jobs while also trying to take care of your own health and your family, and you're describing just how difficult it is to make ends meet and not to mention how impossible it is to have work-life balance. This is beyond unfair, like you said, and that's before we even factor in the specialized training that you have to have and how difficult the work that you do is.

what do you think would make the biggest difference in convincing experienced DSPs like you to stay in this profession?

That's incredible. So you're saying it's not even just about the presence of one consistent DSP and having that relationship, it's also about the broader support structure and the other staff who back that DSP up. That makes sense. Thank you.

Representative Flood, followed by Representative Schlegel.

I think people really need to be trained and know what they're getting into. And they need to be properly trained. And I think, too, this is going to sound kind of crazy, but I think that the individuals need to be more involved in an interview because people are not always matched with the people they serve. People know if they like the person from the beginning. People just assume that a person, because they're intellectually disabled, don't have feelings or don't know if they're going to like the person. Because the person I work with, if he doesn't like you, he starts right away. When you come inside the house, he tells you to get out. if you come, for example, someone came in the house, and he has a thing with keys, so he told the person as soon as they came in the house, take the keys from around your neck And they didn And he reached for the keys and he grabbed them And I said he told you when you came inside to take the keys from around your neck then you ignored him so now he grabbed the keys and now he tossed you and the keys out so people need to be mindful and like you just because the intellectual doesn't mean there's anything wrong with their mind or thinking so people need to like meet the people to see if you're compatible before you start working with them and then you realize you're not compatible, then you just leave. So now they have another disappointment. I think they should be more involved in the training. You don't have to divulge all a person's information, but give people information because a lot of people can't tube feed or don't want to do those type of things, and people shouldn't just go through the training and go in and just decide to leave. That's just more abandonment issues. Like my person was in Hamburg for 32 years, and then to come out and have so much freedom and then people just leave and don't want to be bothered with you, that's just like abandonment all over again, and people can't keep going through that in life. I just wanted to address that comment as well. I think that we don't – a lot of times families joke amongst themselves that all – some of these DSPs that get placed in our homes, and usually these are the ones that do not have the staying power like she does. They're the people that are in the revolving door. We feel sometimes like they passed the mirror test. Can fog a mirror. I've got breath in my lungs. Got the job. Right? We have to have this elevated professional status for these individuals. we have to have you know the training and like she mentioned the ongoing support that they know that they have some someone that has their back someone with in their own agency that they can go to when they run into a difficult problem when this kid won't stop punching his head for whatever reason and yes absolutely having the opportunity as family members to pre-screen these individuals to make sure that they really are compatible with our son or daughter. It really, I think, starts back in the recruitment process and the commitment that a provider gives to candidates, that assurance that they give them that we're here to give you professional development. How much of us in our own careers could, you know, we expect that. That's just part of our careers is that we're compensated accordingly as professionals, and we're continually developed. And that mentorship and development really needs to be a huge part of this. That's how people stay. Thank you.

Thank you, Mr. Chairman. And thank you to all our testifiers, but particularly ladies that are testifying currently. wow your passion is compelling and I can also relate a bit as I have a family in my neighborhood that has a special needs child and she's getting older she's able to attend our public school but as she gets older the family's looking to secure a wheelchair van access, which is a project in and of itself. But I really appreciate your personal experiences and testimony, and I wanted to ask about the process of accessing services. Could you talk a little bit about any recommendations about how we can improve families access to services by simplifying the process to do so

Thank you. Representative Pugh.

Yeah, I'm not sure I have as much to say about the second, but I'll talk to the first point that you made. Families sort of find their own network, right? I mean, we know we just primarily rely on social media to find other people that are in the same boat that we're in, and we connect like crazy that way. Many of us use natural supports because we have to. We don't have staff. A lot of people choose to be a paid caregiver in the system through one of the participant-directed service options that's available through ODP. I did that for a period of time and just decided I wanted to retire from that career. so to have access to community programs that maybe aren't waiver funded for us has been huge we have a nonprofit that's about 10 minutes from my house and they're right along the Montour Trail they built a huge facility these people fundraise like mad they're amazing and they offer services to some of the most complex medically individuals in my region and when I said to them I'd like to have my son Colin come and participate in some of your programs because you're right here on the trail that he loves to walk on every week. Would you be able to support him? He punches himself, he wears a helmet, he has a lot of challenges. And they said absolutely bring him over. Let's do a meet and greet first before you sign him up for any of our programs. And this particular nonprofit has a job development strategy in their long-range plans again they take no way for funding this is private donations and they're really really hard work at raising funds and essentially you know they are now working we started out with the my son likes to be in the kitchen and watch people make things or help and they had a cooking for a cause that program that they run so many months out of the year my son participated in that minimal participation he had a dsp fortunately at that time that went with him and that was extremely helpful and now they are having the kids were making dog treats for to sell to people walking their dogs on the montour trail imagine that so there's a lot of innovation happening um in both our natural supports in the community such as this provider that i'm mentioning but also i think within some of the agencies i think I think that's where we need some more innovation, is these agencies to start thinking outside the box, to think about creative ways to support individuals like my son. I hope that answered at least part of your question.

I, too, want to thank both of you for your testimony today. Let me also say to members of the committee that if there are additional questions that have not been answered today, feel free to submit those questions to both executive directors and we'll get answers to you. as quickly as we can. Ladies, thank you for your testimony today. I'm going to ask... Chairman Heffley to offer closing comments.

really give us a better understanding of the challenges that face IDA as a service system and the real impact those challenges have on individuals, families, and the workforce. We have considered House Bill 1939, and we've recognized that we have to balance the need to ensure providers have adequate and predictable reimbursement to ensure that any additional investment achieves really meaningful results. Most importantly, though, we must keep the individuals receiving these services at the center of the discussion and ensure that they have access to stable, high-quality care. I want to thank representatives Benham and or TTI and I want to thank all of our speakers, the families, the DSPs, the providers, and each member for their thoughtful testimony and participation in today's hearing. And with that, this hearing is now adjourned. Thank you so much. Thank you.