March 8, 2021
Minutes
Minutes
Attendees via Zoom: David Cowing, Nancy Cronin, Brenda Smith, Alli Vercoe, Ann Bentley, Anne Ryan, Beth Morse, Betsy Hopkins, Betsy Mahoney, Bryan Gordon, Craig Patterson, Debbie Dionne, Heidi Mansir, J Richardson Collins, Janet Hamel, Jen Billings, Julie Brannan, Jessi Wright, Joanna Bulger, Jodi Benvie, Kim Humphrey, Laura Cordes, Lily Lin, Lorraine DeFreitas, Margaret Cardoza, Mark Kemmerle, Paula Bush, Peter Stuckey, Ray Nagel, Robin Levesque, Staci Converse, Stephanie Capano Hatcher, Sue Murphy, Luc Nya, Karen McClure-Richard, Vickey Rand, Cullen Ryan, and a few people who joined the meeting in progress and/or left prior to its conclusion.
Click here for a link to a recording of this meeting
Cullen Ryan introduced himself and welcomed the group. Participants names were read by Cullen to save time. Minutes from the last meeting were accepted.
Featured Speakers: Nancy Cronin, Executive Director, Maine Developmental Disabilities Council (Maine DDC), www.maineddc.org. Topic: Final Phase II Early Childhood Special Education Independent Evaluation Report to the Legislature, and related legislation and discussion pertaining to children with ID/DD in Maine and their needs.
Cullen: Today we have Nancy Cronin, Executive Director, of the Maine Developmental Disabilities Council (Maine DDC), presenting on the Final Phase II Early Childhood Special Education Independent Evaluation Report to the Legislature, and related discussion pertaining to children with ID/DD in Maine and their needs. I’ve looked through Nancy’s presentation, and it’s very detailed and provides a lot of information on children in Maine with ID/DD and their needs. It’s great to have you here, Nancy!
Nancy Cronin: Today I’m primarily going to talk about early intervention in Maine. There’s a lot I could talk about regarding children’s services, especially about the waitlists, and the need for waiver services. I could also talk about MaineCare and billing and how it’s affecting services. What I prepared is the crossroads of where we’ve been around early intervention – around IDEA (Individuals with Disabilities Education Act) Part C (0-2 year olds) and Part B 619 (3-5 year olds). We’re really at a crossroads again. We’ve been sitting at a crossroads for a long time. It’s been six years in which we’ve been sitting here, and kids aren’t getting their needs met, and we really need to pick a path.
Begin Presentation (Click here for Presentation)
Nancy: The balance between who is going to serve these kids has been there since the very beginning. Thirty years ago, to about ten years ago, there were 16 different school districts in the state, with 16 individual boards. They were treated very similar to how local school districts are treated now. One of the issues was how we budgeted to fund CDS (Child Development Services). In the first year of the Biennium they budgeted how much they thought they needed, and in the second year they had to address needed funding with the Supplemental Budget. Each year it looked as if there was overspending, but there wasn’t, it just wasn’t budgeted appropriately. It was almost impossible to truly budget for this population.
There has been a larger push to identify children with Autism earlier – because we know early intervention works. It’s important to identify it early and get them into early intervention services while the brain is developing. Early intervention workers are essentially brain developers, and their work is highly undervalued. But due to the money issue and having CDS be a quasi-state agency versus individual districts, it was collapsed, they removed the boards, and created nine sites throughout the state.
In the Penobscot area, there was a time where there were plenty of occupational therapists (OTs). For a while the Department stopped contracting this (and other services) out and provided direct services internally. There were a number of people that had inclusive preschools, and with this change they left the field. A number of years later the Department decided not to provide direct services internally anymore and shifted back to contracting services out. The ebb and flow of administrative decisions created real problems with people’s lives. We have a serious workforce shortage. The workforce shortage wasn’t necessarily created due to one error – it was created through political decisions made over the past twenty years. How many years of reorganization bills have we lived through pertaining to FAPE (Free Appropriate Public Education under Section 504 of The Rehabilitation Act of 1973, the regulation which requires a school district to provide a “free appropriate public education” (FAPE) to each qualified person with a disability who is in the school district’s jurisdiction, regardless of the nature or severity of the person’s disability)? At least a decade. The result has been a pretty deflated workforce.
The longer we’re standing here looking at the two pathways and not picking one and investing in it and boosting up whoever is going to do this critical work. the longer it will take for kids to get their needs met.
The Public Consulting Group (PCG) Final Report recommended eliminating CDS, as it was too difficult to provide services in that manner, and instead move Part C to DOE (Department of Education) and Part B to SAUs (School Administrative Units). Then, it recommended having DOE contract with a provider to run the organizations and districts. They want this done in two years, which is extremely ambitious.
We identify less children than any state in the nation for 0-2-year olds. The trust in the early intervention system took a large hit. A lot of doctors wavered with referring people to early intervention, because only 20% of kids referred were found eligible.
Eligibility testing is done through CDS, and DOE is required to pay for the evaluations. If a parent wants an independent test, CDS must agree. Parents tend to want to trust the professionals at that level very strongly, so they don’t know to go looking somewhere else. Parents often don’t find out how large of an advocacy role they have to play until much later.
-It was asked what the average age is when someone is diagnosed.
Nancy: We’re waiting for the Department to put out the Autism Act Report. The last data I had found the average age was around 3 to 4 years old. We know that kids can be identified as early at 18 months. There was a recommendation that the Legislature consider opening that up. What wasn’t in the report was the trust issues – but they are there.
Maine has above average eligibility in Part B, which means we’re missing a lot of people in Part C and missed opportunities to provide early intervention as soon as possible. The kids ought to be identified earlier.
A large percentage of our kids are being served in private special purpose schools at what could be higher costs. PCG said that’s a least restrictive environment issue. In my professional opinion, that’s really an access issue. There aren’t a lot of places out there and available. I have heard a lot of anecdotes about kids with challenging behaviors being kicked out of programs. Where would they go but to a special purpose program? Maine’s lack of settings is causing an access issue. We have an opportunity to identify kids earlier and have a larger span of potential settings. I’m not a lawyer, but in my view if you look at the bottom line of IDEA, that’s what it’s trying to say for least restrictive environments. We essentially have two options for children currently – we need a full continuum of options.
Regarding the waitlists, the PCG report found that 25% of kids have been on waitlists or have unmet needs. And, the PCG report was very clear that this is lot legal. A child might be 3 years old, identified with needs in October, but there might not be a placement so they end up on a waitlist and might not get services until June. That’s six months without services. For a three-year-old, six months is an eternity for brain growth and development. That is a huge missed opportunity.
-It was asked who did the investigation into York-CDS.
Nancy: The State hired its own investigator in response, and released its own internal findings report, essentially making findings on itself.
-It was stated that there was a significant change in leadership within CDS during this time as well.
Nancy: That’s absolutely correct. But we’ve had many different administrations, and many different issues around CDS. It’s time to fix this. My personal point of view is they have to pick a path. If this is going to be done through the SAUs okay, but how are we going to do it through the SAUs and serve kids efficiently, effectively, and appropriately?
Defining what oversight of Part B to the Department means will be important. Ensuring equity across the local school districts, and how we’ll know kids’ needs are being met are both essential. The stakes are very high. The Department has stated that there are major MUSER (Maine Unified Special Education Regulation Birth to Age Twenty) changes ahead, but we haven’t seen any drafts.
For the 0-2-year olds, the suggestion is to contract with a region to do all the work, then have another layer of contracting with individual providers to provide services. It’s a two-provider layer deep system they’re suggesting. The suggestion is not that DOE does it all, as there’s an inherent conflict of interest if they do. The Advisory Committee is suggesting that whatever is done, there needs to be that role of oversight to ensure that things work well. The Department has to be at the table, to maximize resources such as Medicaid funding. The EPSDT (Early and Periodic Screening, Diagnosis, and Treatment) is the child health component of Medicaid. Federal rules state that children under age 21 who are enrolled in Medicaid are entitled to EPSDT benefits and that States must cover a broad array of preventive and treatment services to ameliorate or solve their issues. IDEA says services need to be at the level of your peers. Somehow what we need to do, as early intervention advocates, is combine these systems to ensure kids are getting the maximum early intervention.
Once upon a time, school districts billed a lot for Medicaid services kids were getting. Back then you could batch bill for all services. CMS (Centers for Medicare and Medicaid Services) stopped allowing this. About 12 years ago, MaineCare eliminated this batch system, and they spread out all the different services, OT, PT, speech therapy, moved specialized services to Section 28, mental health services into Section 65, etc. Everything got broken up. School departments got burned and stopped billing. The bulk of the money for CDS is being funded through general dollars. If they move it to SAUs it would be property tax dollars. There needs to be an obvious way to get federal money. SAUs won’t do it because it’s very complicated. The answer would be a centralized billing system. Hopefully this would be opt-in/opt-out, based on what works best for providers. This could incentivize SAUs to be able to bill and receive money. With centralized billing, it’s one conversation with an insurance company.
Child Find could be connected more with public health nurses and home visiting. So, when we’re accessing services for young children, that we’re also doing Child Find. They need a new brand. And they need new eligibility.
The Advisory Committee’s thought process was if the State wants to move this work to the SAUs that’s fine, go ahead, but don’t do it in a closet. Instead, bring in stakeholders and advocates and work together to develop a clear sequence of steps upon which everyone agrees.
If the Education Committee does nothing, if the can continues to get kicked down the road, we will continue to be at a crossroads. We need to pick a road, build it up, pave it, and get these children the services they need.
Discussion:
-It was stated that the history and the context in which the system has found itself is very helpful. Morality and ethics aside, the money you put into early intervention and early education saves a ton of money down the line. A former special educator stated that he heard in far too many IEP meetings “who’s going to pay for it?” It wasn’t about what the kid needs. This is all about trust building, especially with parents. Having that continuum of services, not just complete mainstreaming or complete special purpose schools, is imperative.
-It was asked if the special purpose schools, the individual therapists, etc. are billing Medicaid.
Nancy: They are maximizing billing through Section 28 and Section 65 for the services provided. Some is for services in the IEP, some is through the medical model. Providers have figured out how to marry the two through billing because they couldn’t survive if they didn’t. CDS isn’t maximizing MaineCare billing as much as they could. SAUs are not billing as much as they could, so for the for the 5-20-year-old population the burden would go to the taxpayers.
-It was asked if the idea would be to hire Medicaid billing experts in the centralized billing system model.
Nancy: Exactly, and it would eliminate that fear of an audit because experts would be doing the billing. With the local SAUs, there’s one person researching it, they aren’t Medicaid experts. It seems untenable to ask every school department to take the time to learn the Medicaid billing rules and insurance rules to maximize funding. They’re overwhelmed already, it’s not in their wheelhouse. It makes so much more sense for a centralized billing system to know these rules and roles. It’s also equally important not to step on providers’ toes if they’ve figured out something that works. Again, in a centralized billing system model my hope would be that it would be opt in/opt out for providers.
-It was asked what the percentage is paid by the federal government for special education.
Nancy: I don’t completely remember, but it’s not 100%. I believe it’s close to 40-50%
-It was asked if braided funding would promote more integrated programs.
Nancy: They should be making it more inclusive for kids for whom this would be beneficial. They would maximize space, provide the least restrictive environment, and they would be following the law. They would also save money. The lines between inclusion and saving money can’t be drawn straight, but braiding money is a way to save money and have better outcomes, and fewer kids who need OADS’ services later on in life.
Peter Stuckey: I’ve been sitting here listening, hoping at some point the words head start would enter this conversation. I’m curious why I haven’t heard them.
Nancy: I would have included head start with home visiting nurses. Head start is essential. But there aren’t enough head starts. For people with kids that aren’t low-income it’s hard to get them into head start programs. We need to put value into head starts and ensure that head start is available for our children. It’s a strong model that not just kids with low incomes need.
Peter Stuckey: There is a special needs component within head start, to include families who are not within the current income guidelines. The state has eligibility flexibility there.
Nancy: The PCG report mentioned head start and suggested moving it to SAUs. As a mom of a child who is 11, in my town the closest childcare center for any kid is 20 miles away. It’s not widespread enough. One of many major criticisms of the PCG report is it didn’t consider the rural nature of the state and there aren’t programs everywhere.
-A special educator stated that it’s important to remember that’s not a solution for all children. The Lewiston-Auburn area has a lot of children with high behavioral needs for whom head start is not an appropriate environment. There needs to be a continuum, and programs ought to work together. It was asked if rates came up in the discussion. Additionally, it was stated that lack of transportation is a major barrier to accessing services.
Nancy: Rates did come up. PCG has said that there’s plenty of money in the system because we’re spending so much money for so many kids in special purpose programs. The other side will say if the rates are increased it would solve all the problems. The answer is somewhere in the middle. Rates are absolutely part of the issue. But, a lack of broad options is also an issue. We must work together, which isn’t happening strongly on the higher levels.
-It was asked if there was discussion regarding how the waitlists are being addressed and the snowball effect of behaviors becoming worse by being on a waitlist.
Nancy: There are three to four waitlists for children in Maine, for Part C they’re now calling it “unmet needs” but for all intents and purposes it’s a waitlist which results in unmet needs. But it’s not legal. There’s a court decision about York that the State must resolve. For Section 28 and Section 65 I’ve crunched data, and I’m working on analyzing the data for kids waiting for these services. The youngest is a 1 year old, the oldest is a 20-year-old about to age out. Some of these kids have been waiting for well more than 1,000 days. The waitlist for children is terrible and it hasn’t been discussed as much. Unlike adult services, children’s services are a right. The fact that we have children waiting for services this long needs to be shouted louder and more frequently. From the age of 14 to 28, there are enormous bursts in brain connections. It breaks my heart to see those adolescents not receiving services – it’s a huge missed opportunity. And, it needs to be addressed systemically.
-A self-advocate stated that she was born in the days when there were no laws to protect her. She stated that she’s thankful that this has changed, but for the sake of the audience who are predominantly parents, PTAs (Parent Teacher Associations) played a large role in advancing laws providing and protecting the rights of people with disabilities. She asked if there are PTAs for this early intervention age range, to ensure there’s a network of support. She stated that there ought to be more local involvement, so that a child in a neighborhood isn’t excluded because they’re not in the classroom with their peers. Communities ought to be supportive. There was discussion regarding the issue of children born substance affected. It was asked is this population was addressed in the report.
Nancy: Substance affected children were not in this specific report, but the CDC has been doing some work on that. It’s important to note in this state being born substance affected is an automatic referral to CDS, but it’s not automatic eligibility – there is no automatic eligibility in Maine. It’s harder to know who this population is, which generally emerges later on in life. Children end up having challenging behaviors that leads to different diagnoses, the underlying cause of which is determined later. If we identified children earlier without stigma, we’d all be better off.
Nancy: Your advocacy is really needed on this – we can’t stay at the crossroads. We must pick a path and build it for these children.
Cullen: Well said, Nancy, and thank you for walking us through this presentation carefully and providing such a rich history and context for the children’s system. I also want to thank you for your tireless advocacy over the years. Well done!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins – Associate Director, DHHS-OADS Disability Services: Last time I was here I mentioned we started a series of listening sessions, in which we will listen to people’s input into the 14-197 C.M.R. Chapter 5, Regulations Governing Behavioral Support, Modification and Management for People with Intellectual Disabilities or Autism in Maine. The rule will need to be amended in order to comply with the HCBS Settings Rule, but as I said last month, we wanted to open the door further to hear about changes people would like to see. This is not a formal comment period or a replacement for the formal comment period required by the Maine Administrative Procedure Act. We had our first listening session and really appreciated the participation – we received great feedback. If you missed that opportunity there are two more sessions: Monday, 3/1 from 2-4:00pm; and Monday, 3/26 from 11:30am-1:00pm. (Click here for the link to register for these listening sessions.)
We’re also doing a series of trainings geared towards community support providers as they align their services to the HCBS Rule and new proposed Section 20, 21 and 29 Waiver definitions for Community Support. Though it’s geared towards providers, anyone is encouraged to attend. The trainings will be conducted by Genni Sasnett, SME, and the three parts include: “Be the Change You Want to See,” “Provider Agency Transformation,” and “Community-Based Support as a Pathway to Employment and Full Community Engagement.” (Click here for more information on these trainings, including links to register.) We receive a lot of questions regarding HCBS, and there’s a lot of information available on our website. If you have questions about navigating the site, you can email [email protected] and ask a question. Someone can point you in the right direction at any given time as well. We are still having our weekly Stakeholder call.
Cullen: Thank you very much, Betsy, for being here!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows could not attend today’s meeting. Click here for the most recent OCFS System Improvement Update.
Special Education – No update
SMACT (Southern Maine Advisory Council on Transition)
SMACT meetings occur on the first Friday of each month, currently via Zoom, at 1pm. SMACT’s new website is going live this Friday, 3/12. The SMACT website and the Coalition website will be cross-linked for convenience and information-sharing. As a reminder, if you want to be on the email list feel free to email Nancy Peavy ([email protected]).
Disability Rights Maine (DRM) Update:
Staci Converse: We have been hearing from a lot of families who have adult children or others in their lives who are in desperate needs of vaccinations, some of whom had appointments to be vaccinated which were then cancelled when the prioritization changed to complete age-based prioritization. There are very high-risk people who need to be prioritized for vaccinations. We’ve started a vaccine petition regarding this (click here for information on the petition).
We’re hearing a lot about people who want to be vaccinated but can’t find a way to access it. Transportation is also a major barrier. Alpha One might be a resource to help secure transportation. We’re still doing the HCBS validation project, which will start back up in the spring, and we’re looking for a couple of validators. (If you’re interested in being a validator more information can be found by clicking this link).
We always have a lot of trainings going on and you can check our website out for more information on those. (Click here for DRM’s website, scroll down and events are on the right.)
Federal & Housing Updates:
Cullen: President Biden has signed numerous executive orders to undo policies put in place in the previous administration. It appears Congress will pass a $1.9 trillion COVID economic relief plan, which is welcome news (available details for which can be found below). Additionally, this administration appears to be dedicated to increasing access to affordable housing, which as many of you know is sorely lacking in Maine and across the country.
Below is the full Federal Budget and Housing Update:
State Legislature Update:
Cullen: The Biennial Budget that the Governor presented to the Legislature was conservative, as she was careful not to raise taxes. However, it appears that in some areas, the Legislature is giving the Governor cover to do more with the budget. Numerous items of testimony have strongly advocated doing more, including finding ways for systems to work better for vulnerable populations in Maine. This is welcome news. I want to highlight that there is a large group of Legislators working on housing issues this Legislative Session. There are some 49 bills in the Legislature pertaining to housing. I’ll call your attention to two bills of note: LD 473, An Act To Create the Maine Rental Assistance and Voucher Program, sponsored by Rep. Victoria Morales; and LR 1923, An Act To Preserve Fair Housing in Maine, sponsored by Rep. Rachel Talbot Ross.
Laura has done an immense amount of work combing through various bills in the Legislature that pertain to the ID/DD world. Thank you, Laura, for your work to keep us up to date on what’s going on in the Legislature!
Laura Cordes – MACSP (Maine Association for Community Service Providers): I’ll start by responding to a question posed earlier about the American Rescue Plan and its relation to HCBS (Home and Community Based Services). There is a provision that would increase the FMAP (Federal Medicaid Assistance Percentage for federal match funds) solely for HCBS. That’s very significant. The bill does go back to the House for additional votes before going to the President for signature. My understanding is that it includes a one-year 10% match, available to states for every HCBS dollar they spend, from April 1, 2021 through March 31, 2022. That gives the State a significant opportunity to have resources we all wish we had as we race towards HCBS Settings Rule compliance.
Since we last met the Legislature considered the Supplemental Budget, which is how lawmakers are addressing the budget under which we’re currently operating. The Legislature has also begun holding public hearings on the Governor’s Biennial Budget.
Laura’s 130th Legislative Session Key Committees & Providers document was shared with the group, which also includes a list of pertinent bills for this group:
Supplemental Budget:
LD 221 – Biennial Budget:
Cullen: Thank you, Laura, for all of this information! For those who haven’t testified in this Legislative Session, the process has changed but it’s very simple. You can provide live testimony during the hearing and/or submit written testimony (Click here for more information). The process for testifying live is very smooth, you’re essentially watching a video feed of the hearing until you’re called upon to testify and then you pop onto the panel with the Committee and unmute.
The next meeting will be on Monday, April 12, 2021, 12-2pm, via Zoom.
Featured Speakers: Dr. Anne Ryan, STRIVE Online Program Director, PSL STRIVE. Topic: Overview of STRIVE WorldWIDE, an online program that teaches independent living skills to individuals with intellectual disabilities and Autism.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(in 2021 the October meeting will be the 3rd Monday due to the holiday)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].
Click here for a link to a recording of this meeting
Cullen Ryan introduced himself and welcomed the group. Participants names were read by Cullen to save time. Minutes from the last meeting were accepted.
Featured Speakers: Nancy Cronin, Executive Director, Maine Developmental Disabilities Council (Maine DDC), www.maineddc.org. Topic: Final Phase II Early Childhood Special Education Independent Evaluation Report to the Legislature, and related legislation and discussion pertaining to children with ID/DD in Maine and their needs.
Cullen: Today we have Nancy Cronin, Executive Director, of the Maine Developmental Disabilities Council (Maine DDC), presenting on the Final Phase II Early Childhood Special Education Independent Evaluation Report to the Legislature, and related discussion pertaining to children with ID/DD in Maine and their needs. I’ve looked through Nancy’s presentation, and it’s very detailed and provides a lot of information on children in Maine with ID/DD and their needs. It’s great to have you here, Nancy!
Nancy Cronin: Today I’m primarily going to talk about early intervention in Maine. There’s a lot I could talk about regarding children’s services, especially about the waitlists, and the need for waiver services. I could also talk about MaineCare and billing and how it’s affecting services. What I prepared is the crossroads of where we’ve been around early intervention – around IDEA (Individuals with Disabilities Education Act) Part C (0-2 year olds) and Part B 619 (3-5 year olds). We’re really at a crossroads again. We’ve been sitting at a crossroads for a long time. It’s been six years in which we’ve been sitting here, and kids aren’t getting their needs met, and we really need to pick a path.
Begin Presentation (Click here for Presentation)
Nancy: The balance between who is going to serve these kids has been there since the very beginning. Thirty years ago, to about ten years ago, there were 16 different school districts in the state, with 16 individual boards. They were treated very similar to how local school districts are treated now. One of the issues was how we budgeted to fund CDS (Child Development Services). In the first year of the Biennium they budgeted how much they thought they needed, and in the second year they had to address needed funding with the Supplemental Budget. Each year it looked as if there was overspending, but there wasn’t, it just wasn’t budgeted appropriately. It was almost impossible to truly budget for this population.
There has been a larger push to identify children with Autism earlier – because we know early intervention works. It’s important to identify it early and get them into early intervention services while the brain is developing. Early intervention workers are essentially brain developers, and their work is highly undervalued. But due to the money issue and having CDS be a quasi-state agency versus individual districts, it was collapsed, they removed the boards, and created nine sites throughout the state.
In the Penobscot area, there was a time where there were plenty of occupational therapists (OTs). For a while the Department stopped contracting this (and other services) out and provided direct services internally. There were a number of people that had inclusive preschools, and with this change they left the field. A number of years later the Department decided not to provide direct services internally anymore and shifted back to contracting services out. The ebb and flow of administrative decisions created real problems with people’s lives. We have a serious workforce shortage. The workforce shortage wasn’t necessarily created due to one error – it was created through political decisions made over the past twenty years. How many years of reorganization bills have we lived through pertaining to FAPE (Free Appropriate Public Education under Section 504 of The Rehabilitation Act of 1973, the regulation which requires a school district to provide a “free appropriate public education” (FAPE) to each qualified person with a disability who is in the school district’s jurisdiction, regardless of the nature or severity of the person’s disability)? At least a decade. The result has been a pretty deflated workforce.
The longer we’re standing here looking at the two pathways and not picking one and investing in it and boosting up whoever is going to do this critical work. the longer it will take for kids to get their needs met.
The Public Consulting Group (PCG) Final Report recommended eliminating CDS, as it was too difficult to provide services in that manner, and instead move Part C to DOE (Department of Education) and Part B to SAUs (School Administrative Units). Then, it recommended having DOE contract with a provider to run the organizations and districts. They want this done in two years, which is extremely ambitious.
We identify less children than any state in the nation for 0-2-year olds. The trust in the early intervention system took a large hit. A lot of doctors wavered with referring people to early intervention, because only 20% of kids referred were found eligible.
Eligibility testing is done through CDS, and DOE is required to pay for the evaluations. If a parent wants an independent test, CDS must agree. Parents tend to want to trust the professionals at that level very strongly, so they don’t know to go looking somewhere else. Parents often don’t find out how large of an advocacy role they have to play until much later.
-It was asked what the average age is when someone is diagnosed.
Nancy: We’re waiting for the Department to put out the Autism Act Report. The last data I had found the average age was around 3 to 4 years old. We know that kids can be identified as early at 18 months. There was a recommendation that the Legislature consider opening that up. What wasn’t in the report was the trust issues – but they are there.
Maine has above average eligibility in Part B, which means we’re missing a lot of people in Part C and missed opportunities to provide early intervention as soon as possible. The kids ought to be identified earlier.
A large percentage of our kids are being served in private special purpose schools at what could be higher costs. PCG said that’s a least restrictive environment issue. In my professional opinion, that’s really an access issue. There aren’t a lot of places out there and available. I have heard a lot of anecdotes about kids with challenging behaviors being kicked out of programs. Where would they go but to a special purpose program? Maine’s lack of settings is causing an access issue. We have an opportunity to identify kids earlier and have a larger span of potential settings. I’m not a lawyer, but in my view if you look at the bottom line of IDEA, that’s what it’s trying to say for least restrictive environments. We essentially have two options for children currently – we need a full continuum of options.
Regarding the waitlists, the PCG report found that 25% of kids have been on waitlists or have unmet needs. And, the PCG report was very clear that this is lot legal. A child might be 3 years old, identified with needs in October, but there might not be a placement so they end up on a waitlist and might not get services until June. That’s six months without services. For a three-year-old, six months is an eternity for brain growth and development. That is a huge missed opportunity.
-It was asked who did the investigation into York-CDS.
Nancy: The State hired its own investigator in response, and released its own internal findings report, essentially making findings on itself.
-It was stated that there was a significant change in leadership within CDS during this time as well.
Nancy: That’s absolutely correct. But we’ve had many different administrations, and many different issues around CDS. It’s time to fix this. My personal point of view is they have to pick a path. If this is going to be done through the SAUs okay, but how are we going to do it through the SAUs and serve kids efficiently, effectively, and appropriately?
Defining what oversight of Part B to the Department means will be important. Ensuring equity across the local school districts, and how we’ll know kids’ needs are being met are both essential. The stakes are very high. The Department has stated that there are major MUSER (Maine Unified Special Education Regulation Birth to Age Twenty) changes ahead, but we haven’t seen any drafts.
For the 0-2-year olds, the suggestion is to contract with a region to do all the work, then have another layer of contracting with individual providers to provide services. It’s a two-provider layer deep system they’re suggesting. The suggestion is not that DOE does it all, as there’s an inherent conflict of interest if they do. The Advisory Committee is suggesting that whatever is done, there needs to be that role of oversight to ensure that things work well. The Department has to be at the table, to maximize resources such as Medicaid funding. The EPSDT (Early and Periodic Screening, Diagnosis, and Treatment) is the child health component of Medicaid. Federal rules state that children under age 21 who are enrolled in Medicaid are entitled to EPSDT benefits and that States must cover a broad array of preventive and treatment services to ameliorate or solve their issues. IDEA says services need to be at the level of your peers. Somehow what we need to do, as early intervention advocates, is combine these systems to ensure kids are getting the maximum early intervention.
Once upon a time, school districts billed a lot for Medicaid services kids were getting. Back then you could batch bill for all services. CMS (Centers for Medicare and Medicaid Services) stopped allowing this. About 12 years ago, MaineCare eliminated this batch system, and they spread out all the different services, OT, PT, speech therapy, moved specialized services to Section 28, mental health services into Section 65, etc. Everything got broken up. School departments got burned and stopped billing. The bulk of the money for CDS is being funded through general dollars. If they move it to SAUs it would be property tax dollars. There needs to be an obvious way to get federal money. SAUs won’t do it because it’s very complicated. The answer would be a centralized billing system. Hopefully this would be opt-in/opt-out, based on what works best for providers. This could incentivize SAUs to be able to bill and receive money. With centralized billing, it’s one conversation with an insurance company.
Child Find could be connected more with public health nurses and home visiting. So, when we’re accessing services for young children, that we’re also doing Child Find. They need a new brand. And they need new eligibility.
The Advisory Committee’s thought process was if the State wants to move this work to the SAUs that’s fine, go ahead, but don’t do it in a closet. Instead, bring in stakeholders and advocates and work together to develop a clear sequence of steps upon which everyone agrees.
If the Education Committee does nothing, if the can continues to get kicked down the road, we will continue to be at a crossroads. We need to pick a road, build it up, pave it, and get these children the services they need.
Discussion:
-It was stated that the history and the context in which the system has found itself is very helpful. Morality and ethics aside, the money you put into early intervention and early education saves a ton of money down the line. A former special educator stated that he heard in far too many IEP meetings “who’s going to pay for it?” It wasn’t about what the kid needs. This is all about trust building, especially with parents. Having that continuum of services, not just complete mainstreaming or complete special purpose schools, is imperative.
-It was asked if the special purpose schools, the individual therapists, etc. are billing Medicaid.
Nancy: They are maximizing billing through Section 28 and Section 65 for the services provided. Some is for services in the IEP, some is through the medical model. Providers have figured out how to marry the two through billing because they couldn’t survive if they didn’t. CDS isn’t maximizing MaineCare billing as much as they could. SAUs are not billing as much as they could, so for the for the 5-20-year-old population the burden would go to the taxpayers.
-It was asked if the idea would be to hire Medicaid billing experts in the centralized billing system model.
Nancy: Exactly, and it would eliminate that fear of an audit because experts would be doing the billing. With the local SAUs, there’s one person researching it, they aren’t Medicaid experts. It seems untenable to ask every school department to take the time to learn the Medicaid billing rules and insurance rules to maximize funding. They’re overwhelmed already, it’s not in their wheelhouse. It makes so much more sense for a centralized billing system to know these rules and roles. It’s also equally important not to step on providers’ toes if they’ve figured out something that works. Again, in a centralized billing system model my hope would be that it would be opt in/opt out for providers.
-It was asked what the percentage is paid by the federal government for special education.
Nancy: I don’t completely remember, but it’s not 100%. I believe it’s close to 40-50%
-It was asked if braided funding would promote more integrated programs.
Nancy: They should be making it more inclusive for kids for whom this would be beneficial. They would maximize space, provide the least restrictive environment, and they would be following the law. They would also save money. The lines between inclusion and saving money can’t be drawn straight, but braiding money is a way to save money and have better outcomes, and fewer kids who need OADS’ services later on in life.
Peter Stuckey: I’ve been sitting here listening, hoping at some point the words head start would enter this conversation. I’m curious why I haven’t heard them.
Nancy: I would have included head start with home visiting nurses. Head start is essential. But there aren’t enough head starts. For people with kids that aren’t low-income it’s hard to get them into head start programs. We need to put value into head starts and ensure that head start is available for our children. It’s a strong model that not just kids with low incomes need.
Peter Stuckey: There is a special needs component within head start, to include families who are not within the current income guidelines. The state has eligibility flexibility there.
Nancy: The PCG report mentioned head start and suggested moving it to SAUs. As a mom of a child who is 11, in my town the closest childcare center for any kid is 20 miles away. It’s not widespread enough. One of many major criticisms of the PCG report is it didn’t consider the rural nature of the state and there aren’t programs everywhere.
-A special educator stated that it’s important to remember that’s not a solution for all children. The Lewiston-Auburn area has a lot of children with high behavioral needs for whom head start is not an appropriate environment. There needs to be a continuum, and programs ought to work together. It was asked if rates came up in the discussion. Additionally, it was stated that lack of transportation is a major barrier to accessing services.
Nancy: Rates did come up. PCG has said that there’s plenty of money in the system because we’re spending so much money for so many kids in special purpose programs. The other side will say if the rates are increased it would solve all the problems. The answer is somewhere in the middle. Rates are absolutely part of the issue. But, a lack of broad options is also an issue. We must work together, which isn’t happening strongly on the higher levels.
-It was asked if there was discussion regarding how the waitlists are being addressed and the snowball effect of behaviors becoming worse by being on a waitlist.
Nancy: There are three to four waitlists for children in Maine, for Part C they’re now calling it “unmet needs” but for all intents and purposes it’s a waitlist which results in unmet needs. But it’s not legal. There’s a court decision about York that the State must resolve. For Section 28 and Section 65 I’ve crunched data, and I’m working on analyzing the data for kids waiting for these services. The youngest is a 1 year old, the oldest is a 20-year-old about to age out. Some of these kids have been waiting for well more than 1,000 days. The waitlist for children is terrible and it hasn’t been discussed as much. Unlike adult services, children’s services are a right. The fact that we have children waiting for services this long needs to be shouted louder and more frequently. From the age of 14 to 28, there are enormous bursts in brain connections. It breaks my heart to see those adolescents not receiving services – it’s a huge missed opportunity. And, it needs to be addressed systemically.
-A self-advocate stated that she was born in the days when there were no laws to protect her. She stated that she’s thankful that this has changed, but for the sake of the audience who are predominantly parents, PTAs (Parent Teacher Associations) played a large role in advancing laws providing and protecting the rights of people with disabilities. She asked if there are PTAs for this early intervention age range, to ensure there’s a network of support. She stated that there ought to be more local involvement, so that a child in a neighborhood isn’t excluded because they’re not in the classroom with their peers. Communities ought to be supportive. There was discussion regarding the issue of children born substance affected. It was asked is this population was addressed in the report.
Nancy: Substance affected children were not in this specific report, but the CDC has been doing some work on that. It’s important to note in this state being born substance affected is an automatic referral to CDS, but it’s not automatic eligibility – there is no automatic eligibility in Maine. It’s harder to know who this population is, which generally emerges later on in life. Children end up having challenging behaviors that leads to different diagnoses, the underlying cause of which is determined later. If we identified children earlier without stigma, we’d all be better off.
Nancy: Your advocacy is really needed on this – we can’t stay at the crossroads. We must pick a path and build it for these children.
Cullen: Well said, Nancy, and thank you for walking us through this presentation carefully and providing such a rich history and context for the children’s system. I also want to thank you for your tireless advocacy over the years. Well done!
End Presentation (round of applause would have occurred were it not for everyone being muted and on Zoom)
DHHS – Office of Aging and Disability Services (OADS) - www.maine.gov/dhhs/oads
Betsy Hopkins – Associate Director, DHHS-OADS Disability Services: Last time I was here I mentioned we started a series of listening sessions, in which we will listen to people’s input into the 14-197 C.M.R. Chapter 5, Regulations Governing Behavioral Support, Modification and Management for People with Intellectual Disabilities or Autism in Maine. The rule will need to be amended in order to comply with the HCBS Settings Rule, but as I said last month, we wanted to open the door further to hear about changes people would like to see. This is not a formal comment period or a replacement for the formal comment period required by the Maine Administrative Procedure Act. We had our first listening session and really appreciated the participation – we received great feedback. If you missed that opportunity there are two more sessions: Monday, 3/1 from 2-4:00pm; and Monday, 3/26 from 11:30am-1:00pm. (Click here for the link to register for these listening sessions.)
We’re also doing a series of trainings geared towards community support providers as they align their services to the HCBS Rule and new proposed Section 20, 21 and 29 Waiver definitions for Community Support. Though it’s geared towards providers, anyone is encouraged to attend. The trainings will be conducted by Genni Sasnett, SME, and the three parts include: “Be the Change You Want to See,” “Provider Agency Transformation,” and “Community-Based Support as a Pathway to Employment and Full Community Engagement.” (Click here for more information on these trainings, including links to register.) We receive a lot of questions regarding HCBS, and there’s a lot of information available on our website. If you have questions about navigating the site, you can email [email protected] and ask a question. Someone can point you in the right direction at any given time as well. We are still having our weekly Stakeholder call.
Cullen: Thank you very much, Betsy, for being here!
DHHS – Office of Child and Family Services (OCFS) - www.maine.gov/dhhs/ocfs
Teresa Barrows could not attend today’s meeting. Click here for the most recent OCFS System Improvement Update.
Special Education – No update
SMACT (Southern Maine Advisory Council on Transition)
SMACT meetings occur on the first Friday of each month, currently via Zoom, at 1pm. SMACT’s new website is going live this Friday, 3/12. The SMACT website and the Coalition website will be cross-linked for convenience and information-sharing. As a reminder, if you want to be on the email list feel free to email Nancy Peavy ([email protected]).
Disability Rights Maine (DRM) Update:
Staci Converse: We have been hearing from a lot of families who have adult children or others in their lives who are in desperate needs of vaccinations, some of whom had appointments to be vaccinated which were then cancelled when the prioritization changed to complete age-based prioritization. There are very high-risk people who need to be prioritized for vaccinations. We’ve started a vaccine petition regarding this (click here for information on the petition).
We’re hearing a lot about people who want to be vaccinated but can’t find a way to access it. Transportation is also a major barrier. Alpha One might be a resource to help secure transportation. We’re still doing the HCBS validation project, which will start back up in the spring, and we’re looking for a couple of validators. (If you’re interested in being a validator more information can be found by clicking this link).
We always have a lot of trainings going on and you can check our website out for more information on those. (Click here for DRM’s website, scroll down and events are on the right.)
Federal & Housing Updates:
Cullen: President Biden has signed numerous executive orders to undo policies put in place in the previous administration. It appears Congress will pass a $1.9 trillion COVID economic relief plan, which is welcome news (available details for which can be found below). Additionally, this administration appears to be dedicated to increasing access to affordable housing, which as many of you know is sorely lacking in Maine and across the country.
Below is the full Federal Budget and Housing Update:
- Federal Budget: Advocates are working to ensure that the FY 22 budget includes the highest possible funding for HUD and US Department of Agriculture (USDA) housing and community development programs.
- Stimulus Funding: The House passed, then the Senate amended and passed, the $1.9 trillion COVID-19 and economic recovery bill, HR 1319, the American Rescue Plan. The bill now goes back to the House for consideration and votes for enactment. The bill calls for:
- Expanded unemployment benefits for millions of people through at least September and indicates that provisions should remain in place as long as they are needed;
- An additional $27.4 billion for rental assistance
- $5 billion for housing vouchers, with funds available through September 30, 2030;
- $5 billion to provide rental assistance and supportive services, to develop affordable rental housing, to help acquire non-congregate shelter to be converted into permanent affordable housing or used as emergency shelter.
- $9.96 billion to help homeowners avoid foreclosure through the Homeowner Assistance Fund administered by the U.S. Department of the Treasury.
- $39 million to assist rural homeowners through USDA’s Section 502 and Section 504 direct loan programs;
- $100 million for housing counseling through NeighborWorks America;
- $4.5 billion for utility assistance through the Low-Income Home Energy Assistance Program (LIHEAP) and $500 million for water assistance through the Low-Income Household Drinking Water and Wastewater Emergency Assistance Program – provided through a separate bill.
- Extending the recently enacted 15% increase in SNAP benefits through at least September;
- State and local government fiscal relief, including funds specifically to support schools and public colleges, funding to hire more local public health workers, and aid to help states and localities avoid laying off more people;
- Expands the Child Tax Credit and Earned Income Tax Credit;
- Another round of $1,400 stimulus payments to individuals;
- Expands premium tax credits to help people afford comprehensive health coverage in the Affordable Care Act marketplaces, reducing or eliminating premiums for millions of people while expanding access to many others who are uninsured; and
- Extends to CDC’s eviction moratorium until September 30, 2021.
State Legislature Update:
Cullen: The Biennial Budget that the Governor presented to the Legislature was conservative, as she was careful not to raise taxes. However, it appears that in some areas, the Legislature is giving the Governor cover to do more with the budget. Numerous items of testimony have strongly advocated doing more, including finding ways for systems to work better for vulnerable populations in Maine. This is welcome news. I want to highlight that there is a large group of Legislators working on housing issues this Legislative Session. There are some 49 bills in the Legislature pertaining to housing. I’ll call your attention to two bills of note: LD 473, An Act To Create the Maine Rental Assistance and Voucher Program, sponsored by Rep. Victoria Morales; and LR 1923, An Act To Preserve Fair Housing in Maine, sponsored by Rep. Rachel Talbot Ross.
Laura has done an immense amount of work combing through various bills in the Legislature that pertain to the ID/DD world. Thank you, Laura, for your work to keep us up to date on what’s going on in the Legislature!
Laura Cordes – MACSP (Maine Association for Community Service Providers): I’ll start by responding to a question posed earlier about the American Rescue Plan and its relation to HCBS (Home and Community Based Services). There is a provision that would increase the FMAP (Federal Medicaid Assistance Percentage for federal match funds) solely for HCBS. That’s very significant. The bill does go back to the House for additional votes before going to the President for signature. My understanding is that it includes a one-year 10% match, available to states for every HCBS dollar they spend, from April 1, 2021 through March 31, 2022. That gives the State a significant opportunity to have resources we all wish we had as we race towards HCBS Settings Rule compliance.
Since we last met the Legislature considered the Supplemental Budget, which is how lawmakers are addressing the budget under which we’re currently operating. The Legislature has also begun holding public hearings on the Governor’s Biennial Budget.
Laura’s 130th Legislative Session Key Committees & Providers document was shared with the group, which also includes a list of pertinent bills for this group:
Supplemental Budget:
- Amendments to the Supplemental Budget were considered in the Health and Human Services (HHS) Committee, which passed in Committee along party lines, thanks to the advocacy of many of the people around this table.
- We had asked for temporary 4-month rate increases and a few months’ worth of retainer payments. The Appropriations and Financial Affairs (AFA) Committee passed a Supplemental Budget that includes retainer payments for community supports. If they come to agreement on the budget, there was bipartisan support for those retainer payments.
- If both parties come to agreement, the House and Senate may vote on the Supplemental Budget on Wednesday, 3/10.
LD 221 – Biennial Budget:
- The Governor’s Biennial Budget Proposal is quite promising for the ID/DD community. It’s a long road between now and the end of the session when the Legislature will adopt the Biennial Budget, but it is definitely promising.
- The Governor’s Biennial budget includes an additional $30 million in funding for Section 21 and Section 29 rates to be commensurate with minimum wage.
- The budget includes an additional $6 million in funding for Section 29. This appears to be just enough to maintain the waitlist – funding for an additional 30 Section 29 offers per month over the two-year biennium. Advocates have asked for additional dollars to address the Section 21 waitlist as well.
- There have been public hearings on the Biennial Budget in front of the Joint Standing Committees on Appropriations and Financial Affairs (AFA) and Health and Human Services (HHS). There was agreement in HHS regarding the Department’s section of the budget.
- Click here to view the Biennial Budget bill online.
- : I want to review a set of bills that might be helpful for this group. I have culled some of the bills that have been introduced for our discussion. (Click here for the HHS, AFA, and Education Committee member contact information, and the list of bills Laura reviewed.) If there are bills that you think ought to be added, email Cullen and I’m happy to add them to the list.
Cullen: Thank you, Laura, for all of this information! For those who haven’t testified in this Legislative Session, the process has changed but it’s very simple. You can provide live testimony during the hearing and/or submit written testimony (Click here for more information). The process for testifying live is very smooth, you’re essentially watching a video feed of the hearing until you’re called upon to testify and then you pop onto the panel with the Committee and unmute.
The next meeting will be on Monday, April 12, 2021, 12-2pm, via Zoom.
Featured Speakers: Dr. Anne Ryan, STRIVE Online Program Director, PSL STRIVE. Topic: Overview of STRIVE WorldWIDE, an online program that teaches independent living skills to individuals with intellectual disabilities and Autism.
Unless changed, Coalition meetings are on the 2nd Monday of the month from 12-2pm.
(in 2021 the October meeting will be the 3rd Monday due to the holiday)
The Maine Coalition for Housing and Quality Services provides equal opportunity for meeting participation. If you wish to attend but require an interpreter or other accommodation, please forward your request two weeks prior to the monthly meeting to [email protected].