Effective Relationships with Teams

Speaking Up to Help Home Feel Like Home

A three-story light gray house with white trim. There is a long ramp running from the front porch directly out toward the sidewalk. The ramp has several large areas of chipped paint on the handrails. The ramp itself is painted gray like the house. The porch has 5 white pillars, also with chipped paint. The shingles on the roof of the porch are black. Under the handrail is a newer-looking cedar thatched fencing that closed off the bottom of the porch to the ground. There is no grass for about 6 feet around the bottom of the house. The house has a front door and two windows. There is a set of steps on the right side of the porch. The second floor has three windows, and the third floor has two windows. All windows have white shutters. There are two hanging baskets on the front porch.

The front of the house with the old ramp awkwardly protruding out of the front of the house.

A three-story light gray house with white trim. With the long ramp removed from the front porch, two boards are nailed across the opening where the ramp was. The porch has 5 white pillars, also with chipped paint. The shingles on the roof of the porch are black. Under the handrail is a newer-looking cedar thatched fencing that closed off the bottom of the porch to the ground. There is no grass for about 6 feet around the bottom of the house. The house has a front door and two windows. There is a set of steps on the right side of the porch. The second floor has three windows, and the third floor has two windows. All windows have white shutters. There are two hanging baskets on the front porch and outdoor furniture on the porch. The house next door is a similar style, green with white trim.

When we removed the ramp, we discovered the bluestone sidewalk.

A three-story blue house with white trim and maroon shutters. The porch has three steps coming off the front of the porch, which lead to the bluestone sidewalk. The first floor has a front door off the porch, along with two vertical windows. The shingles on the roof of the porch are black. The second floor has three vertical windows, and the third floor has two vertical windows. There are bushes and landscaping with woodchips around the bottom of the porch, and the whole yard is green with grass. There are two large planters with plants on both sides of the front steps. There are two hanging plants on the front porch along with patio furniture. There is grass growing between the slabs of the sidewalk.

The fresh paint, removal of the ramp, addition of steps, and landscaping give the house a great new look that blends in with the neighborhood.

What does home mean? Home is more than just a shelter. Home is not just walls and windows but a sense of belonging and identity. Home is your place in the community, your neighborhood. Maintaining your home is often paired with acceptance as community members and partners.

This came to my attention in the fall of 2016 when six men who received support and live in a home in Catskill, New York, felt their home had become stigmatized. They loved their neighborhood and the access to their community, including restaurants, banks, shopping, and leisure activities. They know their neighbors. Their home is a 100-plus-year-old, three-story Victorian house with its charm and challenges. Two men in the home have lived there ever since The Arc Mid-Hudson acquired the house more than 30 years ago. They did not want to leave their home and felt the house should reflect them more accurately as community members. This particular house is located in a historic district where many neighbors have restored the original charm of the Victorian homes. Their house had a large front ramp and faded whitewashed paint. The men felt these features made the house look different. They felt stigmatized because they lived in “The Arc house,” which stood out next to the recently restored homes in the neighborhood.

"We Want the Ramp Removed."

One man who lives in this home asked to have the ramp removed. “We have no wheelchairs,” he observed. “It looks ugly. [Our] neighbors do not have a wheelchair ramp.” The ramp had been on the home for many years and needed an update to remain functional, but the men did not want the ramp updated. They wanted it removed. They did not want to be different from everybody else in their community. During this time, many of the homes near them had been restored to the original Victorian colors and charm. Their house did not look like it belonged. With that in mind, I explored opportunities to repaint the house.

I provide support and supervision to direct support professionals who work in their home. I took their request to remove the ramp and hire painters to repaint the house in Victorian colors. We set to work. I was completing my portfolio for Frontline Supervisor certification through the NADSP Certification program. This gave me additional resources and opportunities to discuss this project. I discussed the project with Board members, guardians, direct support professionals (DSPs), and management staff.

I suggested the men put their request in writing to our agency and sign their names. I discussed the project with maintenance staff, including a timeline and costs. I informed senior management that the ramp was not used for mobility supports. I further explained the challenge of really making this style of home accessible. A ramp is only a small part of making a home accessible. With narrow hallways and staircases, small rooms, and plaster walls, accessibility modifications in a Victorian house are often cost-prohibitive and structurally unsound. This was part of the argument for removing the ramp, according to the wishes of the men who lived there.

This process also empowered the men to advocate for themselves in other ways. They voiced their opinions more openly. DSPs were reminded that the home was theirs, and staff are guests in their home. This makes a difference in how we approach our work!

The six men spoke about their wishes for their house project to every DSP and management staff member they encountered. The project was a topic of discussion during their weekly house meetings and general conversation for months. The men communicated their preference to remove the ramp rather than update it. Asking them questions gave me insight into their feelings and perception of the ramp. I would have never thought they had such strong feelings regarding the home’s appearance. I am very grateful to the leadership who acknowledged and validated the men’s concerns about the ramp. This project reminded me how often decisions are made without input from the people supported. I am certainly more mindful of collaborating with people supported and supporting people to advocate for how they want their homes to look and function. This process also empowered the men to advocate for themselves in other ways. They voiced their opinions more openly. DSPs were reminded that the home was theirs, and staff are guests in their home. This makes a difference in how we approach our work!

Identifying a Team to Carry Out the Project

We were concerned about another barrier. The home was in a historic district and the front walkway would need to be made of a specific kind of bluestone. Bluestone is a kind of stone from New York and used in walkways in our area. Since the ramp had been on the house for many years, no one knew what was underneath the ramp. Getting bluestone could be a significant cost. Luckily, once the ramp was removed, there was ample bluestone underneath that our maintenance department could use! The other challenge was the large size of the painting job. Because the home is three stories with a fire escape stairwell in the back, it was more than our maintenance staff could handle. However, we were able to hire a contractor to do the painting.

Approval to remove the ramp was given on June 16, 2017, six months after the six men sent the initial letter. Three steps were added to the front porch, and the maintenance staff cleaned and straightened the bluestone. The home was re-painted in Victorian colors. After the project was completed, the home became indistinguishable from the rest of the neighborhood. New staff or visitors to the home often remark that they drove right past because the home does not look any different from the rest of the neighborhood! Mission accomplished! Eight years later, it is still one of the neighborhood’s nicest homes. The men there are very proud of their home and place in the neighborhood.

Tips for DSPs

I’d emphasize a few tips for DSPs taking on a large project like this. First, listen to the people supported. Take your direction from them and do not assume you are the expert and can speak for what they think or want. For example, in this scenario, I could have suggested we soften the look of the ramp with landscaping as an acceptable compromise. But this would not have been acceptable to the men who live there. Second, once the goal is established, review the barriers and stakeholders. There were several barriers, and multiple people needed to approve the project. I worked with the men to identify these and plan communications. Third, partner and advocate with the people supported. Value the voice of self-advocates. Do not speak over them. In this case, the board of directors made annual visits to the homes and during the visit, the men spoke of their desire to remove the ramp. Fourth, be patient. This project took six months of active advocacy. I am positive the men wanted the ramp removed long before this, but no one had ever asked them about it.

Do not give up. There is always a way! Evaluate and re-assess. Maybe the final project looks different from what was first envisioned. Or it could be a step toward the final destination. Small successes count. There will always be barriers: time, money, staff, and regulations. Any success is a win and a reason to celebrate.

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Author

Elizabeth Rowntree, MSP, is director of the Northern Region at The Arc Mid-Hudson in Catskill, New York.