I went to Valley House looking for one story and found another.

There’s not much to it—the house, that is.  It’s a single-level rancher in Spokane Valley set away from the road a short distance with vinyl siding and shutters, just like any house in any residential neighborhood.  The only real difference from others on the street is the absence of steps at the front door.  Being level with the ground makes it possible to move the wheelchairs of the five people who live at Valley House in and out with relative ease.  Steps are out of the question here.

"Valley House" is the name The Arc of Spokane has given this 2,500 square foot home where five people with significant developmental disabilities live with support from nurses and aides from The Arc of Spokane.  It is one of seven homes in Spokane where The Arc provides daily living support through its Residential Support program.  Some people come to us in their 40s or 50s; others are in their early 20s when they arrive.  If the home they settle into is a good fit, they generally stay their entire lives.  Their abilities range from what you might call "pretty independent" (able to move and communicate without help) to almost entirely dependent on the qualified nursing staff who care for them day and night.

The five people who live at Valley House fall into the latter category.  That is, their disabilities are such that movement is often difficult for them.  And I’m not talking about walking to the refrigerator to get a soda.  For these folks, simply sitting up in a chair is virtually impossible without help.  Which means much of the day for them is spent either lying down in bed or seated in a wheelchair.  Staff members must be careful to reposition them frequently to prevent bedsores from developing.  We generally call these kinds of disabilities profound since they turn the tasks most people do without thinking—like scratching an itch—into monumental feats of strength and endurance.

And that’s what makes Valley House unique among supported living facilities for people with developmental disabilities.  Some professionals who work with people with profound disabilities believe they are better cared for in an institutional environment—which provides something more like hospital care than home care.  That these five people are living in a "community living" environment, a home in the community where they participate as much as possible in activities outside their home, bucks that trend.  The story of Valley House’s success—or rather the success of those who live there—is remarkable, and it is the story I went there to get.

Brenda, the manager, greeted me at the door and let me in.  Inside, the house looked like any other: there was a comfortable sofa in the living room, a television set and a bookcase filled with books and photos.  The kitchen and dining area was modest but functional.

"This is Kelli," Brenda said, introducing me to a young woman lying in a recliner.  She was pretty, and the fashionable red blouse she wore revealed her greatest passion.  "We call her the Diva," Brenda continued, "because she loves clothes and has to wear the latest fashion."

"Oh, really?" I said.  Kelli’s eyes were looking away from me, toward a corner of the room.  "Hi, Kelli," I said, but she didn’t respond.

"And this is Aaron.  He’s a man’s man.  He likes Harley-Davidson motorcycles and listens to opera."  Aaron was also reclining, a blanket covering most of his body, and looking in a different direction.

"Hi, Aaron," I said.  He made no response.

And so I met everyone in the house: Megan (pronounced "MEE-gan"), who can’t get enough of country music star Carrie Underwood; Whitney, who has dark hair and loves to be near the water, something I personally can relate to; and Stephanie, whom Brenda says is the optimist of the group, always lighthearted and positive.

As a parent of a child with a developmental disability, I feel pretty comfortable around others with unique needs, but I have to admit that meeting Kelli, Aaron, Megan, Whitney and Stephanie was more than I could comprehend in the moment.  I was speechless, pondering in the back of my mind how someone so confined within their own body could exist, let alone be passionate about something.  I had to wonder what life was like for them, and doing so made me feel unsettled, like I was perched on the edge of a dangerously high cliff, a sort of self-awareness vertigo.  I think that everyone who meets a person with a developmental disability for the first time feels this way to some degree.  It poses a question that strikes at the very heart of what it means to be human, and it can be frightening to look at.

Seated in Brenda’s office, I got the remarkable story of Valley House: Before it was managed by The Arc, care for the people who lived at Valley House was driven by the commonly held notion that people who are medically fragile should be protected from virtually everything.  Going outside was limited as much as possible.  Anyone who wanted to visit a resident had to be in good health, and touching was not allowed without a thorough hand-washing.  And whenever a resident had to go to the hospital for an illness, hospital staff were not allowed to provide personal care; the house always sent a person to watch over them day and night.

Of course, the motive behind such close care was the well-being of the residents.  It should be noted that staff members at Valley House spend more time with the residents than they do their own families.  To say that they care deeply for their clients is an understatement.  So they were cautious because they truly cared.  But in spite of their best efforts, emergency trips to the hospital because of illness occurred two to three times a year.  Given the residents’ medically fragile condition, this was regarded as more or less the norm.  Nevertheless, such trips only increased the anxiety staff felt about their health.

When a sudden crisis forced the owner of the house to give up control in 2005, it looked like Kelli, Aaron, Megan, Stephanie and Whitney would have to be separated—a disastrous outcome as far as staff was concerned.  "Most of our folks started living together as infants and young children at St. Anne’s," Brenda explained, "so all they’d ever been through, they had conquered together."

Convinced that the emotional trauma of being separated would be too much for the residents to bear, staff members feared they would not live long away from one another.  "I was in need of daily doses of antidepressants the size of hockey pucks," Brenda recalls.  "Staff would hide in the bathrooms weeping.  Need I emphasize the point that it was a tough time for all?"

Just when things seemed bleakest, The Arc of Spokane agreed to take over operations at the house.  A long-time leader in the effort to promote community living as a model for long-term care for adults with developmental disabilities, The Arc brought a unique philosophy to residential support operations.  Well equipped for the task, The Arc began overseeing Valley House in the summer of 2005.

Transitioning from one style of management to another is never easy, and it took a manager with the right combination of grit and warmth to win the trust of Valley House staff.  Her name was Tammy, and her way of doing things struck at the root of conventional wisdom about caring for people with profound disabilities.  She called it "The Arc Way."

What Tammy wanted was for the five residents of Valley House to experience more of life than they had previously been allowed to.  She talked about them going on outings, having parties, meeting people, and experiencing new things—radical ideas for a group of people who were considered too fragile to leave the house.

Naturally, staff members were resistant.  Brenda recalls: "It was really hard because we could play the medical card.  We’d say, ‘We don’t think this is a good idea for these medical reasons.’  Most of it was baloney.  We were just scared about them being out in the community, about losing control of their environment."

The breaking point came one slushy April morning in 2008.  It was the morning of the first Community Fun Run, a three-mile run along the Centennial Trail designed to encourage social inclusion for people with developmental disabilities.  The brainchild of the Inclusion Network, a volunteer group working through The Arc of Spokane, the Community Fun Run had one objective: to give people with and without disabilities a reason to rub shoulders.  Their hope was that somewhere along the trail a friendly smile and "hello" might breach the barrier that seems to separate those with disabilities and those without.  At Tammy’s insistence, the residents of Valley House were scheduled to go.

But that morning, two inches of snow had covered the world in a thick, soggy blanket.  "It was a blizzard," Brenda recalls.  "It was horizontal snow, and that was one of the times when Tammy and I had it out. I told her, ‘This is absolutely ridiculous.  Our clients do not need to be out in that!’"  But Tammy put her foot down.

"I’m going to veto you," she said.  "They need to go."  So Kelli, Aaron and Megan went to the Community Fun Run in spite of the dreadful weather, Brenda and her staff pushing their wheelchairs through the storm on a stretch of the Centennial Trail that parallels the Spokane River.  She remembered it vividly:

"We brought umbrellas to keep the snow off them, but it was blowing and the umbrella was buckling.  So I finally gave up because I couldn’t push and hold the umbrella at the same time.  And that’s when snow started getting into one of the ladies’ faces.  Flakes were falling into her eyebrows and mouth, just bombarding her.  I panicked for a second, wondering what she would do.  And then she pulled her head back and started laughing.  And that’s when I realized that in her 22 years of life, she had never felt snow on her face.  Of course, her laughter was contagious, and pretty soon all of the clients were laughing and giggling.

"Before I realized it, we were passing the finish line, and I was just blown away.  I thought to myself, ‘Tammy’s right.  She’s so right.  I have denied them things.’  What I called protection was actually denial; it was denying them new experiences.  These clients have every right to experience a blizzard in their face.  A few snowflakes might not be something huge, but when you have so few experiences in your life, something like that is profound."

Brenda smiled and added, "We haven’t missed a Fun Run since."

I had to wipe my eyes.  Then Brenda explained the benefits of this radical philosophy of residential care for people with profound disabilities: Not only are the five people who live at Valley House happier when they get to have snow fall on their face, when water splashes on them during a cruise on Lake Coeur d’Alene, or when they feel the rhythm of a live band at a summer block party—they’re healthier.

"I think we’ve had one emergency trip to the hospital in the past two years," Brenda says—a substantial change over the two to three trips per year they used to experience.  She adds: "It’s not even just their health we see changes in.  They engage the staff much more.  They act more cognizant of people and events happening around them.  They have really contributed to educating the general public on people with developmental disabilities.  They have very active social lives and have developed personal relationships with others outside of Valley House.  One of our people is now a working model with her first layout in an international magazine!  They don’t just exist anymore, they truly live."

As an advocacy-based organization, an important part of our work to improve the quality of life for people with developmental disabilities has been helping to establish community living as a viable alternative to life-long institutionalization for people with even profound disabilities.  We haven’t always made friends along the way.  Some have accused us of jeopardizing people’s health and safety by taking them out of the hospital environment, or of being motivated by financial interest.  That is not the case.  As always, The Arc’s primary motive has always been what is best for the individual.  While we recognize that a community living environment might not be ideal for everyone, if the story of Valley House teaches us anything, it’s that under the right conditions people with even profound disabilities can enjoy rich and meaningful lives in a home in a neighborhood that looks just like yours and mine—without sacrificing anything in quality of care.

The Arc has always pushed the envelope of what we believe people with developmental disabilities can achieve, if given the opportunity.  Where would we be if we hadn’t?  Capable children would have no place in our schools; thousands of hardworking people would never have had a chance to prove their worth in the workplace; and we might never have made possible the countless opportunities that exist today for people with developmental disabilities to achieve truly wonderful things in their lives.

That’s the story I went to Valley House to get.

The other story—the one that gave me vertigo—has troubled me for weeks now, and I don’t know if it can ever be put into words.  Perhaps some heights are simply too great to look down from for very long.

But if I were to peek just for a moment, I would relate another story that reflects something of the quality of life for everyone at Valley House, residents as well as staff.  It happened just after a close member of Brenda’s family had passed away.  Refusing to miss work, Brenda arrived as usual in spite of the tidal wave of emotion welling inside her.  Struggling to maintain composure, her will eventually gave way and Brenda found herself overwhelmed.

It was then that she felt a touch to her hand.  Looking down, she found that Whitney, the resident of Valley House who finds solace near water, for whom sitting up is a monumental feat of strength and endurance, seeing Brenda grieving, reached out her hand and touched her.  A simple gesture of comfort, in its context it became so much more, defying the boundaries of body and mind and bringing into perfect focus the real value of any meaningful relationship.

Everyone has something to offer.  Everyone.
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Brian Holloway
Spokane, Washington