Medicaid, Subminimum Wages & Caregiver Pay with Jennifer Bertrand & Josh Gladstone of MDDC | Disability Rights Podcasts
Jennifer Bertrand (Deputy Director) and Josh Gladstone (Disability Policy Specialist) from the Massachusetts Developmental Disabilities Council (MDDC) speak about the urgent issues facing people with intellectual and developmental disabilities. In this powerful and informative interview from the NCIL Conference, they discuss the impact of Medicaid cuts, the persistence of subminimum wages, and the need to fairly compensate family caregivers. Jennifer shares the personal stakes of these policies with her daughter Chloe running her own business thanks to community-based supports that are now under threat. Josh explains the historical roots and ongoing harm of subminimum wages, as well as the immense unpaid labor provided by families. Learn more about the Massachusetts Developmental Disabilities Council at mass.gov/mddc
Transcript
[00:00:06] Jennifer Bertrand: I am Jennifer Bertrand with the Massachusetts Developmental Disabilities Council. I serve as their deputy director, and I'm also a parent. I have an adult daughter who experiences a significant intellectual and developmental disability. So I'm really passion, passionate about doing work in the disability justice arena. And my name is Josh Gladstone.
[00:00:27] Joshua Gladstone: I am the Disability Policy Specialist from the Massachusetts Developmental Disability Council. And like Jennifer, I've had a connection to disability for a while. I've had. Lots of friends and community members. And in this position I get to, you know, really tackle that thing that I'm really passionate about from a policy systemic structural level.
[00:00:44] Jennifer Bertrand: And we should probably mention, so folks out there know who we are. Like what is an MDDC? What is a Developmental Disabilities Council? Well, um, there's a DD council in every state and Territory, 56 altogether. And we were created with the DD Act, um, the developmental disability. Uh, Bill of Rights Act back in the 1970s.
And we're an independent agency. We're funded federally and our mission, we are dedicated to empowering people with intellectual and developmental disabilities and their families to be able to enjoy full inclusive lives by promoting self-sufficiency, uh, community inclusion and opportunity.
[00:01:27] Joshua Gladstone: Absolutely. I would also add one of my favorite things about working for the MDDC is I really think we do the.
"Nothing about us without us" and really put it in action because we are led by a citizen council membership like board that is made up of parents and individuals that are self-advocates themselves, and we really get to follow their leadership and we can work to empower their voices or to model how other people in the broader developmental disability community in Massachusetts can look to us as an example.
Where policy comes from, what are the most important topics, and we're really led by the community. Which I think is one of the most important aspects of this work.
[00:02:10] Jennifer Bertrand: My daughter Chloe's 25 years old and you know, because she's been able to participate on a home and community based plane, uh, services waiver, HCBS waiver, she's been able to grow up and live in the community.
And today as an adult, she runs her own business. Uh, but in light of recent circumstances with the reconciliation bill. The cuts to Medicaid are really putting people with intellectual and developmental disabilities at risk. We have this institutional bias in Medicaid, the services that she receives, and so many of the people here at the NCIL Conference today, um, those services are non-mandatory under Medicaid.
So in tough economic times when states are looking at budget reductions and they have a lack of resources. History has shown that those services get cut first and that they result in large increases in wait lists so it could jeopardize life in the community for so many individuals, including my daughter, and as a mom, I feel like I can't die until we have more responsible policies, um, in place that ensure the dignity and inclusion of individuals with intellectual and developmental and other disabilities.
[00:03:26] Joshua Gladstone: In the work we do, disability really does, you know, permeate every aspect of society and culture. It's not just about employment or healthcare, it is, disability is in everything. But I guess it, in my effort to pick, I would say thinking about employment for people with disabilities, there are two policies I think about.
And the first one would be sub minimum wages, and then the second one would be about. Caregivers and having appropriate compensation for that really important, you know, experience that many family members are doing in an official or unofficial capacity. So first for sub minimum wages is the idea that this happened.
I think it was after World War I, but when all of these veterans were coming back, the idea was to enable them to participate fully in community, to create a means for them to still have employment and opportunity to engage. Even if they were experiencing a physical disability from their experience serving in the military.
But that is, you know, was an experience long ago. And we are seeing that that practice has not evolved with our times. That we really do know people with disabilities, whether it's physical or intellectual, developmental, want and can work and want and can live in the community. And this practice has stayed, you know.
Well past where we are as a society, and it's an exploitative practice. It's an exploitative practice. So essentially what happens is subminimum wages mean that people with disabilities are being paid, you know, nickels on the hour. They are not yet being paid well below what the minimum wage is at the federal level, which already I would personally say it's too low for anyone to live on, let alone support a family.
But for a person with a disability to be leveled, as you know. Less than and not able to contribute. And it really is a means to alright, not have the opportunity to have meaningful employment and to build community. And you know, no one can live off of that money. And it was really demeaning to their experience, their ability to contribute.
And we're seeing, you know, lots of organizations have submitted public federal comment on this and we're seeing that even with that, you know, uniting an advocacy effort, the federal government has rolled back this federal. You know, public comment period. And we're seeing it tabled once again. Yeah. The week before last, the Department of Labor, uh, entered into the federal register, uh, to withdraw a previously proposed rule to end the payment of subminimum wages.
[00:05:50] Jennifer Bertrand: Mm-hmm. And, uh, it's unfortunate because that means that. Many individuals today across with disabilities across the United States who are working in sheltered workshops or they're working in jobs alongside people without disabilities are paying, uh, less than the minimum wage. Those types of practices would continue.
The interesting thing is that many parents. Submit a comment in support of continuing the practice. 'cause they're fearful that there won't be something else for their family member to do, or they won't be able to engage in make meaningful activities.
[00:06:25] Joshua Gladstone: And then just really quickly, that second piece I talked about, about paid family caregivers is that. We know that there is such a significant portion of our community of developmental disabilities who, you know, really rely on their family members to support them.
And it, this doesn't mean that, you know, people with disabilities are not independent, don't live meaningful lives in the community, but everyone needs support to live the lives they want to live. And you know, in 2011, the CBO released a prediction, I think it was about $238 billion that unpaid family caregivers, that labor that they were providing.
Was $238 billion was being saved. It's a lot by those family members, which is labor, that they weren't being paid for that otherwise the government would've had to cover. And the idea is that family members are providing this service because they love their family. It's not that they're required to do it after a certain age for their, uh, family member disabilities.
I think it's after 22 when they age out of the system. The idea is that if it weren't them living in the community with their, or in their home with their family. They would then be an institution which is more costly for the state or the federal government to cover, and the quality of life is lower for people with disabilities.
So I think that again, really highlights that in the spectrum of employment, whether it's for family members or people with disabilities themselves. My wish is really to see that equal opportunity and that chance given to our community.
[00:07:50] Jennifer Bertrand: For sure. And I would say, I mean, the federal government has already recognized that families are one of the greatest resources to people with.
Intellectual, developmental, and other disabilities. My daughter Chloe, would not be able to live in the community if it wasn't for the incredible support. Anytime, you know, there's a gap in service provision, myself or my husband has to be there. In fact, he's with her right now at home. So I could be here with Josh at this conference and you know, come together with our greater disability community.
And the other thing I guess I would say about that is, you know, once an individual turns the age of 18 and they're a legal adult. Parents are not legally obligated to do anything, but they continue to make great sacrifices. I like to think of the metaphor of a three legged legged stool, right? There's the family, there's um, the state and federal government, and then there are the providers.
And we all contribute in such meaningful ways, and we need to continue to partner together. And when we do that, and families continue to provide, you know. Natural resources or free supports, um, don't take advantage of those families. Appreciate and honor. Just because a service is free doesn't mean it has value.
And what was that number?
[00:09:08] Joshua Gladstone: $238 billion. That was 2011. You know, that's at times before we, we were just seeing in a year, a hundred days how much changes at the federal level from 2011 to now. That is so much money that's being saved from the. Hard work and dedication of our community and they deserve to be compensated so that they can continue to give their family members developmental disabilities, the life that they want in their home and the community utilizing HCBS.
[00:09:34] Jennifer Bertrand: I guess if I had a another wish, I mean, if I had like a genie bottle that I robbed and I got three, then I might also say that my wishes that advocates hear our story here, maybe our podcast today. That they come together and they learn how to build trusted relationships with their policy makers.
Disability is not a partisan issue. It's a human issue, and it doesn't discriminate on the basis of socioeconomic status, religion, political affiliation, et cetera, et cetera. It's so important that we build those relationships and we form these reciprocal relationships. I have worked, um, a decade before I came to the MDDC.
I worked in another state and we worked with policymakers from across the aisle and even, um. Though there, you know, were political affiliations of strong-minded people of pol political affiliations on both sides of the aisle, we were still able to enact an entitlement program. We were able to, uh, enact an adult Medicaid dental benefit, uh, in that state.
And I think there are 15 states still. They don't pay for adult individuals to be able to access preventative oral health services and you can only go to a hospital for relief of infection or to and pain and to have your teeth removed. It's really hard to find employment. It's really hard to be able to eat healthy if you don't have teeth.
So we've got to work together and we need to work with policymakers across the aisle. We're in Massachusetts and you can, um, just Google the MDDC or DD Council MA and you can find us online.
