When a Service Plan Isn’t Enough: Why I Started Preserving Michael’s Story

I thought I would share a little about a project I am working on in Clallam County, Washington, home to communities including Port Angeles, Sequim, and Forks.

The project, Bridging Service Gaps in Clallam County, is developing person-centered multimedia profiles for adults with intellectual and developmental disabilities and autism who have complex, high-acuity support needs.

But before I tell you about the project, I need to tell you about my son, Michael.

Because Michael is why this project exists.

Relationships Come Before Expectations

Michael is my adult son. He is autistic, has an intellectual disability, and lives with complex neurological and medical conditions. He also happens to be a friendly, funny and loving guy with significant social anxiety.

Michael’s ability to trust a new Direct Support Professional (DSP), job coach, Community Inclusion specialist, healthcare provider or frankly anyone entering his world is closely tied to the relationship he develops with that person.

With Michael, relationships come before expectations.

Trust develops when he experiences the same safe, respectful and predictable support again and again. Once Michael knows someone and feels safe, he can be incredibly trusting and affectionate. He deeply loves his family and the people who become important to him.

He also possesses what I sometimes jokingly think of as a “built-in personality scanner.”

Michael can seemingly assess another person’s energy within a nanosecond.

Meanwhile, I am still introducing myself, “Hi, nice to meet you,” and Michael has apparently completed his own full background check.

He is hypervigilant and constantly taking in his surroundings: Who is here? What is happening? Is something different? Will there be unexpected sound, smell, touch, people, or change in routine?

These details matter enormously when supporting Michael.

Unfortunately, they don’t fit neatly into a box on an assessment.

When “Everything You Need to Know About Michael” Becomes Too Much

Over the years, I became accustomed to explaining the nuances of Michael’s support needs to new staff.

And explaining…..

And explaining…..

And explaining some more.

Eventually, I became quite good at recognizing the exact moment when a new DSP’s or Job Coach’s eyes began to glaze over from information overload.

It wasn’t because they didn’t care.

There was simply so much to know.

How does Michael communicate when he is anxious? What does pain look like when he doesn’t express pain in a typical way? How do you know when he needs the bathroom if he doesn’t initiate the request? What happens when he becomes overwhelmed? What words should you avoid? What does an increase in repetitive questioning mean? What should his visual schedule look like, and how do you actually use it?

Those aren’t insignificant details!

For Michael, they can be the difference between feeling safe and becoming overwhelmed. They can affect his health, communication, emotional regulation, seizure activity, overall quality of life and most importantly, his safety.

A service plan can tell you a great deal about a person; though it cannot tell you what 40-plus years of knowing that person has taught their family and longtime supporters.

Then Came the Hospitalization

The need for something better became painfully clear following one of Michael’s surgeries.

Shortly before the surgery, Michael experienced a complete turnover in his residential management team. I had become very reliant on the previous team, who had supported him for more than six years, through multiple surgeries, seizures, and all knew him extremely well.

I hoped that knowledge would somehow transfer smoothly to the new team.

Sadly, it didn’t.

Knowing the new supervisor was still learning about Michael, I prepared a detailed preoperative and discharge checklist. It covered what needed to happen before his admission, during his hospitalization and when he returned home, including the supporting visual schedules and routines.

I thought I had covered everything.

Apparently, my checklist and I had different expectations about the power of written communication. Because a beautifully organized checklist only works when someone reads it.

The Longest Overnight Shift

Our family was with Michael’s throughout his hospital stay, with limited need for his residential staff to be with him during his five-day hospital stay. His dad and partner would be with Michael during the day. I wanted to be present when physicians made rounds, which generally meant being there early in the morning. So, I would arrive around 8:00 p.m. and stay the night until noon the following day.

On Michael’s discharge day, I had been at the hospital from approximately 8:00 p.m. until 3:00 p.m. the next afternoon.

Michael was still experiencing significant pain. The challenge is that Michael does not necessarily look like someone who is in significant pain. He doesn’t always communicate pain in ways an unfamiliar healthcare professionals would recognize. Sometimes an increase in seizures or repetitive questioning tells me far more than his facial expression does.

This creates what I call the delicate parental dance between calmly explaining:

“I know my son, and this is how he shows pain…” all the while resisting the temptation of saying something that I would likely regret later.

Advocacy while sleep-deprived is an art form. And as exhausting as it was for me, Michael was the person actually experiencing the pain.

“Everything Is Ready.”

Before leaving the hospital, I confirmed with the new residential management that Michael’s home was ready for him to go home.

Freshly laundered sheets and blankets on the couch where he prefers to rest during the day? Check.

Clean bedding on his adjustable bed? Check.

Soft foods such as yogurt and cottage cheese in the refrigerator? Check.

Garbage taken out? Check.

Everything was prepared so Michael could come home, have his pain managed appropriately and be able to recover in his familiar environment.

I was assured it was all done.

We arrived home.

It was not all done.

In fact, essentially none of it was done.

The couch cushions were stacked on the floor. There was no clean bedding on the couch. The supervisor said she didn’t know where the freshly laundered sheets were, the ones I had washed, sealed in bags and delivered before surgery to Michael’s house.

I reminded her about my detailed checklist.

She told me she hadn’t had an opportunity to read it (though she had had it for more than two weeks prior to Michael’s surgery).

Oh, Lord, give me strength!

I found the bedding and made-up the couch.

Once Michael was settled, I asked whether he wanted yogurt.

“Yes!”

Yeah finally. Something easy. I confidently opened the refrigerator.

No yogurt.

No cottage cheese.

None of the requested soft foods were there.

At that point, I discovered that my carefully prepared checklist had apparently become more of a piece of literary work rather than an operational document.

And Then I Met the New DSP

There was another surprise waiting for us on Michael’s return home. A brand-new DSP was being trained at Michael’s house, the day he was discharged home.

Introducing a new person immediately after major surgery was certainly not ideal for someone with significant social anxiety, but I was assured the new DSP would only be there briefly and that the supervisor would remain with Michael for the evening.

I eventually went home after making a run to the grocery store, with a lingering, uncomfortable feeling that something wasn’t quite right. Nothing else had gone right, why would I think otherwise?

At approximately 8:00 p.m., my phone rang. There was a problem with Michael’s discharge medication orders and the Medication Administration Record (MAR). Staff could not administer his prescribed pain medication.

So, I drove back to Michael’s house. When I arrived, I discovered something even more concerning.

The brand-new DSP, who was only going to be there briefly, had been left alone with Michael. The supervisor made a decision that Michael seemed receptive to this new guy and she left, essentially telling the new DSP to hang out with him, draw pictures, and call her if he needed help.

I want to be very clear about something:

This young man was not the problem.

He had been placed in a situation for which he had not been adequately prepared.

He didn’t know Michael.

He didn’t know how Michael communicated.

He didn’t know how Michael expressed pain.

He didn’t know how to use Michael’s visual schedule, in fact, he didn’t even know what is was.

And he didn’t know that Michael was unlikely to use the bathroom independently, he rarely does.

When Michael saw me walk through the door, the relief on his face was unmistakable.

I asked the young man when Michael had last used the bathroom. The DSP told me Michael hadn’t gone since returning home (several hours ago). He explained, “he didn’t ask to go!”

And he was right.

Michael hadn’t asked.

Because Michael doesn’t typically ask or even initiate the need to go.

Particularly when he is anxious, in pain, recovering from surgery and sitting in his home with someone he barely knows.

For Michael, the solution could have been remarkably simple: write “Go to the bathroom” on his visual schedule or hand him a “bathroom” icon.

But the DSP hadn’t been taught that.

How could he know if nobody had taught him?

That’s When Something Clicked for Me

That evening was not simply about a missed grocery list, bedding, medication paperwork or an inexperienced DSP.

It was about knowledge.

More specifically, it was about what happens when critical knowledge about a person does not successfully travel from one person to the next, one management team to the next.

Michael’s communication, health and safety had become vulnerable because the people responsible for his care and support did not yet understand the critical details of how he experiences and navigates his world.

I spent the rest of that evening with Michael.

And afterward, I started thinking seriously about how we could do this differently.

The Birth of Michael’s “Onboarding Training”

I began with a PowerPoint I had previously developed about Michael.

Then one PowerPoint became four training volumes:

• Who Is Michael?
• All Behavior Is Communication
• Support Strategies That Work
• Healthcare

They were comprehensive…..very comprehensive…..possibly Monica level comprehensive, ugh!

And I eventually had to acknowledge yet another problem.

Even good information can become ineffective when we hand a new DSP, job coach or community inclusion specialist an enormous amount of written material and expect them to absorb, interpret and remember it while simultaneously learning a new job, new policies, new goals for a person they were not given enough time to learn about or spend reasonable time with.

So, training evolved again.

From a Binder to a Multimedia Profile.

I began developing what eventually became Michael’s multimedia profile.

Instead of relying primarily on written descriptions, I added narrated presentations, photographs, videos, stories and real-life examples.

The core training is approximately 75 minutes, but the site goes much further.

It includes examples of Michael’s daily visual schedules and Social Stories, as well as visual routines for medical and dental appointments, blood draws, urine samples, surgical preparation, staff changes, vacations, call-outs, and just about every other unexpected circumstance I could think of.

It contains important documents and practical resources.

It also includes information about Michael’s family and the people who matter to him the most, so staff can help him maintain those relationships including helping him write letters.

Most importantly, it doesn’t simply describe Michael’s disabilities.

It tells people who Michael really is.

Why This Matters Beyond Michael

The value of Michael’s multimedia profile has been immeasurable to me and all those who support him; from residential DSP, Job Coach, Community Inclusion Specialist and healthcare providers.

And it made me wonder:

What if other families had an opportunity to preserve this knowledge before a crisis, staffing transition or provider change occurred?

That question eventually contributed to my applying for an RFP in Clallam County to develop multimedia profiles with and for other families by recording details, pictures and other pertinent information about their loved one.

And that brings me back to Bridging Service Gaps in Clallam County.

The disability service system is and has been experiencing significant workforce challenges and staff turnover for some time. DSP, Job Coaches and Community Inclusion Specialists are often asked to do extraordinarily complex work while entering people’s lives with limited time to learn decades of history, preferences, communication supports, learning strategies, relationship development techniques, medical considerations and other successful support strategies.

A new DSP cannot possibly know what no one has had the opportunity to teach them.

And families/guardians cannot realistically be expected to start from the beginning every time someone new walks through the door.

My Hope for Bridging Service Gaps

My hope is that a multimedia profile can help bring to life a person’s story in ways that an assessment or service plan cannot capture.

I want a new supporter to learn not only what assistance someone requires, but also:

Who are they?

What they like to do?

What makes them laugh?

What brings them joy?

Who do they love?

How do they communicate?

How do they learn?

What makes them anxious?

What relaxes them?

What does pain look like for them?

What does sickness look like for them?

What helps them feel safe?

What and why routines matter?

What type of personality is a good match as a support provider for your loved one?

What does accessing their community look like and what is needed for it to be successful?

What has already been tried, tested and true? There is no reason to reinvent the wheel!

And, perhaps most importantly, what do the people who know them best already know and have already learned?

The goal isn’t to replace assessments, service plans, DSP training, or professional expertise in their recognized field.

It is to connect those things with something equally valuable: the accumulated knowledge of the person, their family, and the people who have built meaningful relationships with them.

So, I am currently seeking four (4) Clallam County adults with an intellectual and developmental disabilities or autism, with high acuity support needs and families/guardians to participate in this pilot project at no cost to them.

My hope is simple.

I want support providers to have better tools to learn and adapt to the uniqueness of the person they are supporting, rather than continually expecting people like Michael to adapt to every new person who enters their lives.

Because Michael has already spent a lifetime teaching us who he is, we just need a better way to make sure his story travels with him.