In 2013, Oregon implemented a plan to expand access to home and community-based services for Medicaid recipients with intellectual, developmental or psychiatric disabilities. The goal was to allow more Oregonians to receive care at home rather than in an institution. While programs were established for individuals with intellectual and developmental disabilities, no supports have been created for individuals under age 21 who require inpatient-level psychiatric care. Senate Bill 909 would require the Oregon Health Authority to establish criteria for that program and a pathway to services.
Jessa Reinhardt is a parent and mental health advocate pushing for SB 909. She joins us with more details on the bill and what it could mean for families with children who have severe mental health needs.
Note: The following transcript was transcribed digitally and validated for accuracy, readability and formatting by an OPB volunteer.
Dave Miller: From the Gert Boyle Studio at OPB, this is Think Out Loud. I’m Dave Miller. In 2013, Oregon implemented a plan to expand access to home and community-based services for Medicaid recipients with intellectual, developmental or psychiatric disabilities. The goal was to allow more Oregonians to receive care at home rather than a residential facility. But in the 12 years that have followed, no supports have been created for people under the age of 21 who require intensive psychiatric care.
A new bill in the Oregon State Senate aims to change that. It would require that the Oregon Health Authority establish criteria for care and a pathway to services. Jessa Reinhardt is a parent and mental health advocate who’s pushing for Senate Bill 909. She joins us now. It’s good to have you on Think Out Loud.
Jessa Reinhardt: Thank you. Good to be here.
Miller: I gave a one sentence or so version of the important historical context here, and I feel like we need a little bit more. So what services did the state commit to providing to high needs children and other people in Oregon back in 2013?
Reinhardt: Yeah, so the K Plan is kind of a broad array of services that are offered to individuals if they meet the Medicaid income level and a certain level of care. And when our state built this plan, they included high medical needs children, individuals with intellectual and developmental disabilities, and they also included individuals under 21 who have kind of severe psychiatric support needs. Those services include attendant care, which is one-on-one support with daily living. So if you need help brushing your teeth, you need help being safe in the community, you have somebody paid by the state to kind of help you with your day-to-day tasks, so you are living at home instead of a facility.
Transportation, assistive devices and technology – if you need help communicating with technology, the state would help provide that. Relief care – if your family is your primary care provider, somebody could be at your home for 24 hours so that your parents can go on vacation or attend work training, those types of things. Behavioral supports as well. And being in the state plan, the federal government reimburses those services at 64%. So the state actually puts in less than half of the cost for those services.
Those kind of slowly developed and kept growing since 2013, but they never did anything to implement those services for youth who have high psychiatric needs. So they’ve just been left in the dust with no services for those 12 years.
Miller: But we have talked in the past about some issues that families have dealt with. They have some critiques of what has been offered for their family members, but you’re saying that for families who have children with serious psychiatric conditions, they’ve gotten nothing. It’s not just they have quibbles or or some criticisms, but they’ve gotten zero.
Reinhardt: Yeah, they get zero support. Those who are in the middle of crisis, the families are told to, what they call ER boarding, which is go and drop your child off at the ER, and leave. Maybe a room somewhere will open up for them. Other than that, there’s no services. And we have in Oregon, historically every year, 100 children who we lose to suicide under the age of 25. So we’re at a crisis. We know that the state is ranked last for mental health services, including for children, and it just keeps getting worse.
Miller: What do you think is behind this 12-year delay? I mean, is it simply a question of money?
Reinhardt: Money, I think, is part of it. I think money is always kind of the root of everything not working out in our state. But a big part of it is that I call these children the invisible children, they’re not really seen. Their conditions aren’t seen. People view mental illness in adults, and they see homelessness and substance abuse. They don’t realize or even acknowledge that those same issues affect children and that’s when they start. So we spend all of our money and our time and energy into the adult world, when these children are suffering the same as the adults.
Miller: What have you heard from friends or other advocates about what this has meant for children and families who need this level of psychiatric care but can’t get it at in-home or community-based places?
Reinhardt: We have children in crisis every day who just can’t get anywhere and parents who are fighting with the state, fighting with their providers, trying to get care, but they can’t. What I kind of see generally is that if we can get these services to these children and these families now, then we are going to prevent a lot of harm later. So we’re going to support families as they are now, so that the parents and the children have the tools that they need. When children are young, they’re able to learn skills so much easier. So if we can get those services and those skill building to them now, then they have a much higher chance of being successful later in life.
Miller: Lawmakers passed a bill in the short session last year aimed at speeding up the establishment of these services. What came from that?
Reinhardt: So, Senate Bill 1557, it’s also known as The Culture of Yes, is a huge bill. There are six different sections in that bill, but the main focus for today’s conversation is it demands that the state finally implement the services that they promised in 2013. But there wasn’t much other than that forcing the state to do so, so it just said [that] the state needs to do this. And over the years since that bill passed, nothing’s really been done. We’re still in the same spot we were. There’s organizations collecting feedback from families, but we still haven’t made a single step forward in actually getting these services implemented.
Miller: We got this statement from the Oregon Health Authority this morning: “OHA is actively working with partners and the community on improvements to home and community-based services. Greater access to these services can lead to improved health outcomes and quality of life. Reduced reliance on institutional care can offer more accessible and culturally-responsive alternatives to institutional care for children and youth. This is aligned with OHA’s vision for person centered care which meets people’s needs and eliminates health inequities.”
What’s your response?
Reinhardt: That’s kind of what they keep saying, is that we’re we’re moving towards it, but I feel like they’ve had 12 years to move towards something and get something going. I think that advocates and families have been yelling for years about the needs for these services, so we already have that information. The legislature codified it into law that it must be done. So why are we still talking about it and not actually moving forward?
Miller: What would the current bill, Senate Bill 909, do? I mean, if you just said there’s two bills already that say do this, what about this new one?
Reinhardt: So Senate Bill 909, its original version was to put a date in which the Oregon Health Authority needs to ask for federal approval for these services, create a level of care criteria so we know which level of support need a child needs to qualify to get the services, as well as an assessment on what those services are. In addition, it would add additional services on top of what is available through the K Plan, through what is called a waiver, so that’s additional services on top of that. And those services would be employment services, family training so that families would be able to support their children better, and environmental safety modifications. So if you have a child who is struggling with suicidal adulation, you can put locks on your medicine cabinet and the state would pay for those things. So it would do that.
Unfortunately, the fiscal impact statement, so what the legislature says the bill will cost, came back at $140 million. The current talk is that 909, as originally written, will not be able to move forward because the state doesn’t want to spend that much money. The amendment that’s being proposed is to just put a deadline on the K Plan services, the original services, for the end of the year so that the state would have to get those going by the end of the year.
Miller: If I understand correctly, so basically it would set a deadline for what the state has already said it would do, but striking out additional services.
Reinhardt: Correct, yeah.
Miller: Jessa Reinhardt, thanks very much.
Reinhardt: Thank you.
Miller: Jessa Reinhardt is a parent and mental health advocate. She joined us to talk about Senate Bill 909. It would push the state to make it so people under the age of 21 who require intensive psychiatric care can get that care in their homes or communities.
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