Trauma-Informed Behavior Support

This is good stuff.

TikTok · OpenFutureLearning 3887 likes, 82 comments. “Fave / least fave?”

Sensory friendly day at the Ohio State fair! The morning of August 2nd.

Sensory friendly livestock sounds good to me ☺️

OCALI | Ohio State Fair Sensory-Friendly Morning Ohio Center for Autism and Low Incidence

https://www.washingtonpost.com/wellness/2023/03/23/intergenerational-trauma-mental-health/

Advice | 4 ways to break the cycle of intergenerational trauma Cultivate a relationship with anger. Make space for all feelings. Know that true love comes with understanding. Meet your child's needs.

This is exciting stuff.

Missteps with Trauma-informed Schools Missteps with Trauma-Informed Schools I am a part of a team of highly committed, innovative, and creative individuals who all believe that we are the right people to create meaningful and positive change. Each of us also believes deeply that YOU are the right person for this job too. There are three...

Intersectional and mind-opening.

The Dangers of Courage Culture and Why Brene Brown Isn’t For Black Folk – Dr. Carey Yazeed The other day there was an interesting thread on Twitter with Dr. Jenn M. Jackson, a columnist at Teen Vogue, regarding her initial encounter with the writings of Brene Brown and her thoughts on how the author encourages white supremacy by telling white women to be courageous and vulnerable. She sta...

If you care about people with disabilities, read this. This is our field’s reality. Ohio is about 18 months away from the same situation described in the article. (Maybe more, maybe less, but it has already started.) Without a sea change in funding for people with disabilities, this corner of the social safety net will be unrecognizable in a few years.

https://www.disabilityscoop.com/2022/11/15/family-caregivers-forced-fill-gaps-dsps-short-supply/30138/

by Rachel Sun, Lewiston Tribune/TNS | November 15, 2022

LEWISTON, Idaho — Every day, when Lorie Ewing wakes up, she has a job she knows she’ll be doing from 8 a.m. until the time she goes to bed: caretaking for her adult daughter, Becca Ewing-Ford.

Becca, whose seizure disorder and medications led to a gradual decline in her cognitive function, requires full-time, one-on-one care.

Lorie, who retired in 2016 and whose husband has his own health issues that prevent him from caring for Becca, manages Becca’s medication, and helps her shower, eat, use the toilet and move around. Every night, she carries her up the stairs to bed at their home in Genesee.

“That’s a year of 24/7 care, pretty intense care, that I’ve been doing with her,” Lorie said. “I’m getting older, I can’t do it forever. I would just be happy to have a day here and there. And it’s not even possible to do that. So it’s difficult.”

Last year, Becca was in residential habilitation at Milestone Decisions, a Moscow-based community support agency that provides care for people with intellectual and developmental disabilities.

Those support services can include residential habilitation, but also hourly or group care depending on a client and their needs. Agencies like Milestone may help with hygiene, daily living skills, cooking, cleaning and help get clients out of their homes and participating in the community.

But when the agency’s staff numbers dropped too low to support Becca’s needs, she was sent home. Lorie said although she’s happy to do things for her daughter, she worries about what could happen to Becca if she became unable to take care of her daughter.

Reimbursement is the issue

Ewing’s family is far from an anomaly, said Kelly Head-Halladay, the director of operations for Westcare Management, which oversees Milestone. Since the start of the pandemic, community care providers, even more than those in other states, have been in crisis.

The biggest problem, she said, is the state’s reimbursement rate, which allows for an hourly wage of about $10.40.

Milestone was able to bring its wage up to $11.50 an hour by making cuts in other areas, Head-Halladay said. Even so, it wasn’t nearly enough, especially as the pandemic pushed competitors with a less demanding workload to pay several dollars more per hour than they could.

“No matter how much you love this population — you cannot live on what we offer,” she said.

Caroline Merrit is the executive director of the Idaho Association of Community Providers, or IACP. She says many direct support professionals take second jobs to make ends meet.

“I am hearing (about) a lot of staff members who kind of moonlight as something else in the service economy,” she said. “I heard there was one guy who was actually sleeping in his car, waiting to be called either for a DoorDash order, or for night shift agency work.”

Because of that wage gap, agencies across the state are severely understaffed. They’ve had to run deficits, discharge clients and sometimes even close their operations entirely. Overtime for the few staff that do stay also adds to the cost, Head-Halladay said. Milestone runs about 30% overtime every pay period.

Despite all of those challenges, staff at Milestone, and other agencies, had been looking to what they thought was a light at the end of the tunnel: a promised increase in reimbursement rates as of July 1 of this year, which they had expected since late in 2021. The reimbursement bump would have supported wages rising from $10.40 an hour to $14.50.

“Is it enough? … You know what, we live to fight on another day,” Head-Halladay said. “And that’s all that we want.”

That reimbursement increase was supposed to come along with a new service array, she said, but providers were also told during training that, even if the new service array was delayed, they would receive the updated rates.

Providers across the state, including Milestone, planned wage increases to take effect in July. According to an August survey by IACP, 22 out of 29 providers, or 75%, reported they had increased staff wages with the understanding they would receive a reimbursement increase July 1.

But when July came, there was no relief.

“We built around that (rate increase),” Head-Halladay said. “And then we were told, ‘Nope, sorry about that. Not going to happen.'”

The cause for that delay, Head-Halladay said, was a clause in the funding for the first two years of that new service array: The American Rescue Plan Act requires that service eligibility or rates not change. But with the new service array, which is meant to provide patients more choices in the service they get, it could be possible for some patients to lose services.

That wasn’t the only delay in funding providers experienced during the pandemic. In 2021, the Idaho legislature passed House Bill 382 in part because of lobbying by supported care agencies.

The bill funded $16 million to the Department of Health and Welfare for the Enhanced Medicaid Plan Program, and $62 million specifically allocated for enhanced reimbursement rates for home and community-based services. They were supposed to be distributed in April 2021, but only started being distributed in March 2022.

Head-Halladay said Milestone had been running a deficit for the past fiscal year — but starting in July, those numbers jumped to anywhere from $20,000 to $40,000 a month.

One program Westcare managed in Boise had to close. Milestone, she said, could last through early next year. But Milestone is also well-established, with a bigger reserve account than other agencies.

“I would say if you’ve been here less than 10 years, you’re gonna be struggling right now,” she said.

As of IACP’s August survey, 15 out of 29 providers said they were currently running at a deficit. Of those deficits, seven selected the zero to $10,000 range, three selected $10,000 to $25,000, three selected $25,000 to $50,000, and two selected $50,000 to $100,000.

“For a lot of providers, that line in the sand is coming up,” Head-Halladay said. “There are several providers who, if things didn’t change, they’d have to close their doors in November.”

Five providers in that survey reported they’d had to close an office, at least temporarily, because of staffing issues, Merrit said. But she said the true number is likely higher.

“I know there’s more than that, because obviously the ones who have closed probably dropped their membership with us,” she said. “So we’re not counting those. But there have been several closures of agencies within the last two years.”

Not every agency still operating is an IACP member, Head-Halladay added, so closures within that group would also not be counted.

What it means for clients

At this point, Lorie Ewing said she’s not counting on the state for help, and is considering moving to Oregon to get access to support services.

“We are a supposedly advanced society,” Lorie said. “It feels like we should be able to at least help families take care of those who need help.”

One Lewiston resident, Kees Beehner, has relied on supported living services most of his life because of an intellectual disability. Since 2019, he’s lived with 24-hour residential habilitation support from Opportunities Unlimited Inc. in a home with two other OUI clients.

Kees’ mother, Stephanie Beehner, said her son has benefitted from living with people outside of his immediate family, and she’s seen improvements in his behavioral issues. Kees has also learned skills he wouldn’t have had the opportunity to acquire if she and her husband were the primary caretakers.

For the Beehners, the changes to how the state regulates care has left uncertain what support Kees will get in the future.

OUI has some limited ability to self-fund services thanks to its thrift store in downtown Lewiston, said President and CEO Hannah Liedkie. But most of the funds from the thrift store go to things like training, technology upgrades and travel time with rural clients that isn’t factored into reimbursement from the state.

Her agency also increased its wages in July, Liedkie said. If OUI doesn’t start getting that funding back from the state, it will eventually need to re-evaluate what services it can afford. The first to go, she said, would be the residential habilitation Kees relies on.

“I can’t go back on those wages. I just flat-out refuse, I’m not going to bring somebody on and say, ‘By the way, this is temporary.’ So we plan on keeping those rates,” she said.

OUI provides 24-hour residential habilitation care for six clients, including Kees.

“If we walk away from that, not only (do they not) get that service, but that more than likely they will lose the housing and they will have to be institutionalized (if their family can’t care for them),” Liedkie said. “No decision that I ever want to make displaces one person, let alone six. But that would be what we would have to do.”

If Kees did lose that support, Stephanie Beehner said it would likely affect not only her son’s well-being, but her ability to work her current job, volunteer and spend time with her family.

As difficult as the Ewings’ and Beehners’ circumstances are, Head-Halladay said, clients like Becca and Kees are lucky to have a supportive family member who can take care of them at all.

Patients like Becca, Head-Halladay said, have ended up discharged to hospitals.

“They end up, maybe if they’re lucky, in skilled nursing,” she said.

Clients who need support with more emotional and behavioral needs often end up homeless, she said.

“You never get ‘kicked out of the system.’ They come back in through getting arrested, through going to the ER, through all these other areas,” Head-Halladay said. “That is happening currently. They’re homeless.”

According to IACP’s August survey, over 60% of respondents said they would need to start discharging clients within six months. Seven of those providers said they had between zero to three months left.

Providers are also turning away clients seeking services. OUI serves about 44 children, and had a waitlist roughly as long as of August. In its survey, IACP asked providers how many clients they’d turned away in the past month. The answers ranged from five or 10 to over 100 clients.

The way out

In September, members of IACP met with the governor’s office; Dave Jeppesen, the director of the Idaho Department of Health and Welfare; and Juliet Charron, the Medicaid Division Administrator at IDHW.

The meeting followed a slew of families calling the governor’s office with stories similar to the Ewings’.

Since then, providers have been told funding is “imminent,” though they have not received a timeline yet. Head-Halladay said she’s hopeful.

“They’ve said it would be imminent for the last month. So they got approval from (the Centers for Medicare and Medicaid Services) to be able to do those increases,” she said. “(But) we still don’t have them yet.

As of last month, Head-Halladay said she was expecting an update from the state, potentially with information about the new reimbursement rate and timeline for its implementation, within a few days.

“Part of me feels I’m being silly for being cautiously optimistic. You know, that might be more of my idealism than anything else,” she said. “But I am.”

Liedkie said part of the problem — and what she hopes to see change — is that direct support professionals aren’t taken seriously or treated with respect despite the importance and demand their job requires.

“Right now, there is no Bureau of Labor Standards job description for this particular field. To me, that’s the most disrespectful part of it, is that we don’t even recognize them as a job,” she said. “You’re entrusting a person’s life with this individual, and I think that if we want the job done, right, we need to treat them with the value of what that job looks like.”

Head-Halladay said she hopes Idahoans who receive services, and their families, will get to see that their voices make a difference.

“We as providers, we’ve been screaming for years,” she said. “Even before COVID hit. It really did take the citizens, the individuals who receive services, and their families, to really make their voices heard on this to make the needle move.”

Family Caregivers Forced To Fill In Gaps With DSPs In Short Supply Understaffed service providers are sending people with disabilities back to live with their families, turning away new clients and making other changes.

Kicking off a training sequence with an exciting group of people.  and there were delicious sliders. 

Our Community Director!

There is no better time to start becoming your best self then now! 🏞

https://www.pacesconnection.com/blog/10-things-you-didn-t-know-were-trauma-responses

10 Things You Didn't Know Were Trauma Responses Recognizing trauma responses is an important skill for trauma-informed leaders to learn—and knowing these common trauma responses is a great place to start. When we view the world with a trauma-informed lens, we can identify two distinct states of mind or headspaces. Of course, this is an overly s...

Some good peer-reviewed research is referenced (seconding what lots of autistic people talk about anecdotally).

At least 50% of children on the autism spectrum stim. Many families wonder if they will outgrow it. Dr. Hanks says there is no perfect answer because stimming has not been well researched. The general assumption is that stimming lessens as people age. However, it is less clear if that decrease is the result of a natural progression or in response to social pressure.

The survey in Autism would suggest the latter: “Participants reported that stimming became less socially acceptable as one got older. … Several participants offered compatible narratives from their own experience, in that they stimmed happily as young children but by secondary school (11-16 years) norms changed, and they hid or transmuted stimming once aware of negative judgement.”

Stimming: Repetitive movements by people with autism are essential coping mechanisms “Stimming” repetitive movements or sounds are essential coping mechanisms for people with autism. Learn more from autism specialist Christopher Hanks, MD.

States not investing in the I/DD workforce is incredibly costly, alas.

Local perspective on Ohio: unless there is a sea change in pay for the direct care workforce, the disability system as it exists in Ohio will not exist in a few years. If you have a loved one with a disability, anticipate ever having one yourself, or know someone who does, this is a big deal.

From the article:

“With so many workers leaving the industry — where the rate of pay is in line with fast-food restaurants and retail stores — the additional costs of retraining new workers, including many of whom may not remain in the jobs, is depleting the limited amount of money set aside for caregiving.

“We don’t often talk about the actual cost of our staffing crisis,” said Tom McAlvanah, president of the New York Disability Advocates and executive director of the Interagency Council of Developmental Disabilities. “Provider agencies are spending millions of dollars to combat turnover of direct support staff. Investing those resources into competitive wages and workforce initiatives that promote retention of essential staff would help stabilize our system of supports and ensure continuity of care for New Yorkers with I/DD.”

Workforce Crisis In IDD Sector Costing Millions Survey findings from industry stakeholders in one state show that a staffing crisis at residential facilities for those with developmental disabilities is costing more than $100 million a year.

Rest can be hard to find, here are 7 types of rest to explore.

Ideas via Dr. Dalton Smith
Sketchnote via Sylvia Duckworth

Graphic credit The Therapist Parent

https://www.understood.org/en/articles/8-ways-to-help-your-middle-schooler-connect-with-other-kids

Help Your Middle-Schooler Make Friends | Trouble Making Friends in Middle School Making friends in middle school can be hard for kids with learning and thinking differences. Learn ways to help your tween connect with other kids.

https://www.washingtonpost.com/lifestyle/2022/06/27/vivek-murthy-surgeon-general/

Vivek Murthy wants to fix our mental health crisis. But how much can he do? Surgeon General Vivek Murthy, who has lost 10 family members to covid-19, wants to make his mark on our epidemic of loneliness.

The Governor’s Children’s Initiative, Ohio Department of Education and Ohio Department of Mental Health and Addiction Services are hosting “Stronger Together: Children’s Mental Health and Resiliency Virtual Conference” on June 28 and 29, 8:30 AM - 1 PM. The conference is free to attend and open to professionals across the state who affect the lives of children, such as teachers, administrators, school personnel, mental health service providers, health care professionals, and others. Register now to reserve a spot.

2022 Stronger Together -Home The Governor’s Children’s Initiative, Ohio Department of Education and Ohio Department of Mental Health and Addiction Services are excited to announce the Stronger Together: Children’s Mental Health and Resiliency Virtual Conference, June 28 and 29.

Thanks Tim Collingwood for sharing.

I might have a new favorite book.

https://vm.tiktok.com/ZTdst7GyX/?k=1

📚 💙 Reading With Megan 💜 📚 on TikTok Why Johnny Doesn’t Flap. NT is OK!

Here is the truth of so many people that I know and love and support.

And I say this as someone who lives to realize person-centered everything for people with severe disabilities: if the needed supports aren’t availability and sustainable, it’s not much of a “plan,” is it?

This is all VERY real.

Powerful annual report from NJ’s Ombudsman for developmental disabilities highlighting systemic shortfalls in the DD system. Excerpt:
“I also believe that some people lose their way, becoming desensitized and detached - intellectually, physically and emotionally - from the people they are supposed to serve. Less understanding. Less empathy. And seemingly less concerned about the consequences of their decisions.
As a result, this disconnect rears its ugly, infuriating head continuously throughout the life of an individual with intellectual or developmental disabilities and expresses itself in myriad ways:
⋅ This disconnect is felt by a parent when school district officials claim that their child with significant disabilities does not need therapies or any special accommodations.
⋅ This disconnect is felt by a parent when government officials do not act with urgency to provide their family with intensive in-home supports or place their self-injurious child in an emergency residence.
⋅ This disconnect is felt by a parent who is told to “just fill out the form” as if that parent has not already filled out numerous forms, including the one in question.
⋅ This disconnect is felt by a parent who is asked to reaffirm – time and time again – that their child still has autism or some other lifelong developmental disability.
⋅ This disconnect is felt by a parent who is told that their child does not qualify as “disabled” by the Social Security Administration despite having multiple disabilities since birth.
⋅ This disconnect is felt when the family of an autistic child, who elopes into traffic, is denied safety fencing as a disability-specific home modification, because the fence "restrains" the child.
⋅ This disconnect is felt when a managed care organization inexplicably and unexpectedly reduces a family’s personal care assistance/nursing hours or denies a request for a medically-necessary device.
⋅ The disconnect is felt when a government official dismisses a parent’s concern about the lack of physicians available to people with intellectual or developmental disabilities – physicians who are willing to accept Medicaid and who are willing and properly trained to treat these individuals.
⋅ This disconnect is felt by someone with disabilities when they are told about New Jersey’s status as an "Employment First" State, but not given the transportation resources needed to get to and from a job.
⋅ This disconnect is felt when someone realizes that the New Jersey Comprehensive Assessment Tool (NJCAT) – which is used to determine the resources available to an adult with developmental disabilities - relies on a series of “black and white” questions to assess individuals whose disabilities usually present in shades of gray.
⋅ This disconnect is felt when someone listens to webinars about the benefits of “person-centered” planning, but then told to accept a one-size-fits-all policy regarding the use of their individualized budget.
⋅ This disconnect is felt when a loving couple realizes that their marriage would likely result in the elimination of much-needed government benefits, such as Supplemental Security Income (SSI) or Medicaid coverage.
⋅ This disconnect is felt when someone hears aspirational talk about “self-determination” and “community integration” only then to be told that the resources are not available to hire personal aides or nurses to keep them safe, independent and in the least-restrictive environment.
⋅ This disconnect is felt when someone in a congregate living setting consistently has unexplained injuries or health conditions, yet officials dismiss the possibility of abuse or neglect.
And this disconnect, which is a constant for so many individuals and families, has consequences. It not only causes a lot of frustrating conversations; it also leads to a lot of bad decisions and bad outcomes. Moreover, it also has a less obvious, yet insidious effect in that it traumatizes and re-traumatizes individuals and families who are already emotionally abused by a seemingly cold, uncaring system – one that makes them often beg, plead and fight for basic supports and services for themselves or their loved ones.
The cause of this disconnect is varied, but I have no doubt that much of it results from the lack of direct, personal interaction between decision makers and those impacted by their decisions – a point addressed at the end of this report.”https://www.disabilityombudsman.nj.gov/documents/2021-Annual-Report.pdf

The Ohio Afterschool Child Enrichment (ACE) Educational Savings Account provides a $500 credit to pay for a variety of activities to accelerate learning for students ages 6-18. Examples of eligible activities include tutoring, day camps, music lessons and field trips. Income-eligible families may apply for an ACE account here: https://education.ohio.gov/OhioACE

The intersection of autism and trauma has had my attention for a while, and Christa Mullis shared a presentation that connects so many dots in a rich way. I thought I was going to just flip through, but it had my rapt attention. Like in every other aspect of humanity, connection is, and has always been, the thing, it seems. Gift yourself some time to watch.

https://www.youtube.com/watch?v=cZ_ao7u6sHM

Attachment, Bonding and Trust: The Missing Components in Modern Autism Practice The effects of an insecure attachment in childhood are well known to have long term effects on relationships. Yet, this is often an overlooked part of autism...

Cash, 14, "loves hugs and jumping on his trampoline," says mom Stephanie.

She says he is also nonverbal (limited use of AAC), is not toilet trained and "has violent outbursts where he attacks his parents and cannot keep himself safe. He is mostly stable right now on the right combination of medications, but it does not eliminate violent outbursts that become more dangerous the bigger he gets. His autism and inability to communicate makes medical care very difficult -- he has to be put under general anesthesia for dental work and restrained for immunizations. I can’t even cut his hair while he is awake because of the sound and his sensory issues and he wakes up if I try to cut it while he is asleep."

"He is worthy of living a life where he is safe and protected," Stephanie adds. "I love my son like every other mother loves her child and I want to make sure he is taken care of after my husband and I are no longer living. I don’t see what our options are at this point."

Grants for Cuyahoga County arts & culture organizations for inclusive activities for people with disabilities. Some good stuff here.

Cuyahoga DD is pleased to open its 2022 Request for Proposal process to Cuyahoga County arts and culture-based individuals and organizations, public libraries, and recreation centers that are interested in creating and/or increasing inclusive and accessible programming for people of all ages with disabilities.

The 2022 RFP process is an expansion of 2021 process, which focused on recreation, and will include:
• Up to 10 awards of an amount not to exceed $8,000 each for arts and culture-based organizations;
• Up to five (5) awards of an amount not to exceed $3,000 each for libraries; and
• Up to 10 awards of an amount not to exceed $15,000 each for recreation centers.

For more information and to apply, visit: cuyahogabdd.org/2022-rfp/. Deadline to apply is 5:00 p.m. EST February 11, 2022.

This guy. I don’t know him, but I feel like he would be my kind of guy.
And I really dig how this campaign is including the full reality of . 

Today, ASF is kicking off its awareness campaign tied to the news of The Lancet Commission's formal endorsement of the term . This term is intended for autistic people who are likely to need 24-hour support throughout their lives.

Jonah Lutz, 22, learned to read and write before he could talk, loves finding his favorite Sesame Street videos on YouTube and eating "ketchup and hamburger and French fries." He also has a history of very aggressive and self-injurious behavior that necessitated an almost year-long hospitalization at age 9.

"My greatest fear is that once he moves into a residential setting no one will care enough to find out what he means when he asks for a 'fun list' or 'white chips,' or know that he needs to sleep with the light on," says mom Amy Fisher Lutz.

Lots of news happening . . .
https://www.disabilityscoop.com/2021/12/06/national-guard-idd-care-facilities-staffing-shortages/29617/

National Guard Called Into IDD Care Facilities Due To Staffing Shortages The National Guard has been called in to help staff four health facilities for people with disabilities or mental illnesses, a sign of how severe staffing shortages have become.