Rachel’s Story: A Documentation Case Study

Written by Mary K Spears

My Do-dad would not exist without Rachel.

MyDoDad would not exist without Rachel. Rachel has a rare transverse chromosomal disorder that results in a dual diagnosis of cognitive impairment and schizoaffective disorder. When Rachel was struggling to adapt to a new home after the death of her mother, her friend and care worker Mary saw a problem with Rachel’s supports.
Without clinical levels of documentation, many agencies and providers were unable or unwilling to commit the necessary resources. While Mary had been documenting her experiences and providing notes from other professionals, Rachel had experienced the frustration of having someone following you around with a clipboard trying to make you live your life according to its requirements. She was unsurprisingly resistant to the idea of doing so again.
Because of this conflict, Mary and Rachel started brainstorming a new solution. They got together with a mutual friend to build something that would:
  • Document Rachel’s support needs accurately.
  • A tailored system that flexed to
    accommodate Rachel’s unique independence goals (instead of the other way around).
  • Ensure that Rachel was involved in directing her documentation process with the same success with which she directed her care staff.

Rachel’s Story 

Rachel’s story will sound familiar to many families. Born with significant disabilities as a result of a genetic condition, Rachel’s care was the center of her parent’s world for the first 20 years of her life. Her father worked for the Boise School District and her mother worked from home so she could be home and care for Rachel.
While her parents did everything and more to keep Rachel home, her support needs were substantial and overwhelming. When Rachel became an adult, she was systematically dropped from many of the community programs that her parents had relied on for assistance.
It’s no secret that there is vastly more support available for children with disabilities than adults.
For a while, they tried enrolling Rachel in various development centers, but found they did not understand her complex behavioral and mental health needs. Unfortunately Mental Health Services in Idaho will not admit people with cognitive impairment.
Finding Mary as a caregiver felt like a miracle! Mary had grown up in the same community and was a third-generation caregiver with experience in home and community settings (She literally grew up in a group home, her parents operated, with nine disabled adults). Her understanding of managing developmental disabilities and behavioral modification was backed by years of experience and a decade of modern treatment certifications.
But even though this was a great change, it was almost too late. By the time Mary started with Rachel at age 21, she was extremely unhealthy. At over 400lbs Rachel had type-2 diabetes, sleep apnea, a heart murmur, and chronic cellulitis requiring annual intravenous antibiotics. Rachel was frequently having psychotic episodes due to medication refusals and the voices told her to kill herself or others. Rachel’s prognosis was looking grim.
Luckily, Rachel & Mary were destined to become a dynamic duo. Mary devoted herself to helping Rachel get regular exercise, take her medications on time, find mental health techniques that empowered her, and things were starting to look better. (note: As a result, over the last 7 years, Rachel and Mary became health-buddies and lost over 350lbs together.)
When Rachel’s mother passed away without warning, Rachel was able to take a huge step on her road to independence. Knowing her father couldn’t meet her support needs on his own, they asked if she could move in with Mary’s family. Mary and her family decided they wanted Rachel too, and a bigger house was found for all of them.
Through it all, one person was always there for Rachel, Mary. But that was more of a problem than it appeared at first glance.

The Challenge of Living more Independently

When Rachel moved from her father’s house to Mary’s new family home, she faced new challenges related to her new environment and new routines. But Rachel was willing to make hard yet healthy choices, and Mary was willing to support her while she did so.
This is how it went for some time, all through Mary’s pregnancy and the addition of a new child to the household. Rachel was making great progress, but Mary was on the brink. To quote her:
Unsurprisingly, such overwork can cause serious burnout and Mary was no exception. By the time they started looking for solutions, Rachel was struggling to find her personal independence because her work with Mary dictated her daily routine, while Mary was working so much with Rachel she had hardly any outside life at all.
To make matters worse, there was a conflict between Rachel and the State of Idaho over how/if she could be safely contained by her staff when she had episodes that disabled her conscious control over her actions.
In all too many cases, this combination of regulatory conflict, personal safety hazards, and employee burnout would cause the team to give up. Hundreds of people like Rachel lose all of their existing supports in these situations and end up being remanded to facilities against their will. In fact, the manager of the certified family home program told Mary that if Rachel’s condition was that difficult to manage, she needed to be in a State facility.
But Mary refused to quit Rachel, and Rachel refused to quit on herself.
However, they were left with a significant set of challenges:
  • Rachel needed additional staff who were properly trained regarding Rachel’s unique challenges. This would allow Mary to recuperate from burnout and find some life outside of her caregiving work. Rachel needed to be able to have her life outside of Mary because as much as they got along, there are many things Rachel likes that Mary doesn’t and she deserved a chance to explore those things with other people. This is core to Supported Independence.
  • Rachel’s current evaluation of supports didn’t include enough financing to hire additional staff.
  • Rachel’s size and condition meant that any care workers needed to be highly skilled, and the standard pay rates for support workers were inadequate.
  • The state was unwilling to allocate additional funding without proof that the initial evaluation was inadequate, and Mary’s testimony (which included hundreds of pages of Provider and circle-of-support documentation) was not enough.

Why did we need to build MyDoDAD? 

Mary and Rachel went hunting for both solutions and a clearer understanding of the problem. Why was it so hard to get adequate funding for supports? What could they do to PROVE that while Rachel’s support needs might be intensive, the benefits of person-centered care in her home of choice were creating massively improved outcomes for Rachel, at less than 25% of what Rachel’s needs would cost taxpayers in a state-run facility.
In 2012 the State of Idaho was involved in a class action lawsuit for using an outdated, largely discredited, and arbitrary support evaluation tool. This tool, using the SIB-R, largely based support needs on maladaptive behaviors; meaning that people with successful supports would lose funding as they made progress towards improving their outcomes. The judge sided with the people against the State. He directed the Department of Health and Welfare to find and adopt a more equitable system, and provide injunctive relief to participants in the meantime so that their budgets would remain stable.
But Mary discovered an insight into this process. There was a disconnect between the evaluators seeing major problems or gaps in care, but not having a way to understand what supports are required in order to solve or prevent them.
And thus the search for a person-centered documentation process began.
Over the next several months, Mary tried all sorts of documentation solutions. These included paper documentation, downloadable apps, and more, but found one consistent problem.
All of the solutions in the market were focused on observing behaviors and conditions, but had no way to document the supports themselves. This meant it was easy to document when Rachel had a bad day, but very hard to document all the little things her family and staff did to prevent more bad days.
So in the absence of an existing solution, Mary did what she does best: she started looking for a support team, only this time for her documentation needs.

The Birth of Person-Centered Documentation

The first steps to create a person-centered documentation solution was to sit down with Rachel and her “circle of support”, specifically her doctors and other professional providers. Together, they produced 316 pages of clinical documentation to submit to the state to request a funding increase. The state agreed to raise the rate (but only for Mary) by just $1.00 per hour.
Additionally, the process of creating and collecting this documentation took a significant amount of time. Mary had to gather most of these documents manually from multiple provider offices, adding to her already overloaded workload.
Finally, after much deliberation and experimentation, Mary and Rachel realized that most of the challenge with care managers and evaluators was due to one of three misunderstandings:
  • The evaluator assumed a lower level of support frequency than what was being delivered. (ie – they automatically assigned Mary’s wound care supports as weekly instead of daily activities or only counting a cue once per goal when it could take up to 10).
  • The evaluator underestimated the duration of events and their corresponding supports; meaning that Mary’s daily activities were given a default time allotment that was less than what was required in real life.
  • The evaluator did not have the ability to understand Rachel’s unique condition, and as a result underestimated the intensity of her episodes. (Keeping a 300lb 5’11 woman in a psychotic state from running into traffic is harder than it sounds).
So Mary started asking around, to see if anyone in her network could help her build something that communicated supports in an accurate way. She found some sympathetic ears, and while many people liked the idea, most didn’t see how much difference documentation would make. Even the experienced developers she knew said she would need at least a million dollars to create something viable.
Undaunted, Mary kept asking until she was reminded that her good friend JC had built several support document automation systems for Idaho plan developers already. After a brief conversation, JC agreed to build a test version for Mary and Rachel to use in documenting Rachel’s required supports in real time.
Over the next month, Mary documented EVERYTHING that was a direct support of Rachel’s independent living goals as outlined in her support and spending plan. She and Rachel both met regularly with JC to discuss their experiences. This was a crucial step, as they all learned that Rachel was keen to understand her own needs, and to be involved in directing her own supports.

The Results

After more than a month of intense learning and documentation activity, Mary and Rachel decided they wanted to return to the State with their new and compelling evidence and demand the supports Rachel required to live in the home she loves.
With their plan change pending, Mary and Rachel went back to their standard care routine, only this time with MyDoDad in tow. And even without any feedback from regulators, things were starting to improve. During her experimentation, Mary had kept extensive paper logs. But one of the challenges was how much time it took to thoroughly document meant that she consistently had to prioritize documenting only the most intense adverse events or not get sleep.
With MyDoDad, documentation time was slashed to a few quick button presses and a notes summary. As a result, Mary began to document smaller supports and, before too long, activity improvements.
This was a game changer for both Mary and Rachel. They could, for the first time, look back at accurate logs for the entire day, and discuss what was going well and what needed improvement and attention. Rachel found that being able to review her positive progress was a major motivator for improving her lifestyle and behavior choices.
Beyond the personal motivations, Mary was able to share specific data with Rachel’s circle-of-support including people like her med manager. With specific data about medication effects, Rachel’s activities, behaviors, and supports for such things, the providers were able to understand her condition more thoroughly, and help Rachel understand the relationship between her choices and her medical outcomes.
These results would have been enough in most cases, but Rachel still needed more staff to pursue her goals, and that required action from the State. When the state finally responded, the results were thrilling.
The state had taken the MyDoDad data, as well as the documentation from providers, and sent it to a number of experts for review. That included a clinical psychologist, a registered nurse, and a licensed social worker. While we don’t know what conversations were had, the results were unprecedented:
  • It was determined that Rachel’s supports funding was too low. They established a new base funding level (prorated through the end of the plan year) more than 80% higher than what she had been approved for only 6 months earlier.
  • Although previously denied, it was agreed that Rachel met the criteria for Intense Behavioral Support which allowed community support workers to be paid above the current wage cap and Intense Medical Support which allowed her to hire staff sufficient to cover 1:1 support, 24/7.
  • By the end of her plan year, Rachel had shown such engagement with MyDoDad that her planwriter created MyDoDad specific goals so Rachel could use the system to better self-direct her care. The state agreed with these goals and also agreed to pay for MyDoDad out of Rachel’s annual adaptive equipment budget.

Conclusion

Rachel’s story may seem extraordinary, but it reflects an increasingly common reality among the aging and disabled communities and the care workers who support them.
“It’s hard to communicate support needs, when existing systems of documentation and evaluation are centered on documenting symptoms and incidents, instead of supports and actions that drive independent living outcomes.”
As healthcare increasingly adopts more person-centered solutions (see Person Centered Thinking for more info), it is vital that we recognize that person-centered documentation is a vital pillar of support in an increasingly data-driven healthcare environment.
If you are tired of not being seen, heard, or believed about your support needs, consider MyDoDad. Adopting a person-centered documentation system allows your care team to present an accurate picture of the real work they do every day. This accurate representation of work requirements allows you to better advocate for appropriate compensation, and attract qualified staffing candidates (even in the middle of covid shutdowns and mass resignations).
Our unique approach to comprehensive care documentation puts the whole picture of person-centered care at the center of our technology. We combine that comprehensive capability with a no-distraction interface, and easy access to support and customization.
This means you and your care team can do more documentation in less time, with less stress – and focus on what matters most: supporting people in living their best lives and achieving their goals.

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1 Comment

  1. Anonymous

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