Children who are medically fragile come to A Rosie Place for up to 10 nights at a time for respite stays. During this time, parents are given the gift of time. If you are seeking respite care for your medically fragile child, call A Rosie Place at 574-235-8899.
Tieal Bishop is no stranger to ambitious ideas.
Bishop is the CEO and executive director of A Rosie Place for Children, and she’s been with the organization since it began 11 years ago.
A Rosie Place originally was incorporated in 2003 as the O’Hana Heritage Foundation, Inc., and Bishop was serving on the board as a parent representative.
“We started with nothing,” she says. “Our first year we raised $4,000.”
By January 2011 the facility for A Rosie Place for Children was complete and offering respite service to medically fragile children — children who require medical interventions or devices to sustain their lives. The nonprofit is the only one of its kind in Indiana, and it serves the entire state at no cost to families.
In the early days, Bishop says it was a community effort to get A Rosie Place running.
“Our first 8 or 9 years, it was nothing but philanthropy,” she says. “Our Michiana community built and sustained A Rosie Place for its first 8 or 9 years. That inspired me to keep going.”
Today, thanks to careful planning, A Rosie Place for Children operates with no debt.
“That speaks to our commitment to stewardship and making sure that we utilize every gift that we get to the maximum capacity in a way that has the maximum impact,” Bishop says. “As we grow, that’s an amazing testament to the leadership here.”
Thanks to that leadership, A Rosie Place for Children is in a position to expand and grow its ambitious goals.
Bishop and the team at A Rosie Place for Children have identified three major areas of expansion to better serve Indiana’s families of medically fragile children.
A Rosie Place for Children is situated on 5 acres of property at 53131 Quince Road in South Bend.
The back half of the property is currently mostly undeveloped. Bishop wants to change that, sort of.
Currently, there is a small pavilion and a wheelchair accessible waterfall / pond in the rear of A Rosie Place. The rest of the property is either wooded or open green space. Bishop wants to transform the rear into four regions: North Falls, West Woods, South Point, and East Lawn.
Here’s how she envisions each region being developed.
North Falls: This area is where the waterfall / pond are now, and is mostly complete. As part of the development of the wooded area, Bishop says that she’d still like to build the pond up higher and bring sidewalks out to the middle of the ponds so kids could look in and be more engaged.
West Woods: This area is where Bishop is really looking to expand. She wants to create an immersive experience for the children with mature trees, raised garden beds, and nature stations where the kids can learn, engage, touch, and feel different aspects of nature.
South Point: This area is where HeARTworks Studio will be built (see below).
East Lawn: This area is going to remain as an undeveloped green space, where the kids are free to run and play or move as they’re able.
Bishop explains that oftentimes, families are so concerned with the day-to-day care of their medically fragile children that the idea of going out to ride a tricycle or feed the birds is a luxury of time they can’t afford. That’s where A Rosie Place for Children is uniquely positioned to help.
“Some of our children have never even touched dirt. Every child should get dirty!” she says. “Regardless of their medical condition, there’s a way for them to do that. We create those opportunities when families can’t.”
The expansion of the regions will include linking all areas with wheelchair accessible sidewalks, which will weave in and out of the woods. There will also be sensory and engagement stations where the children will be able to interact with nature and dig in the dirt. There will be a central wooded area that remains mostly wild to encourage natural flora and fauna.
“We’re really creating this environment that will draw the natural habitat to it and doing it in a way that will be accessible to all of our medically fragile children regardless of their mobility,” Bishop says. “We’ll be designing it in a way that we’ll be able to keep nature, the environment, and the things that we create very close to the accessible sidewalks and areas so that the kids are able to get in the middle of it.”
Art is universal. All kids love to create pieces of art, and Bishop and the team at A Rosie Place have recognized how important that is in the lives of children.
Staff members at A Rosie Place for Children have incorporated creating artwork into the activities of the children who stay with them. The team quickly discovered that it helped to create trust and built a bond between them and the children. It also gives the families a tangible expression of their medically fragile child’s creativity.
“Every time a child comes and stays with us for a sleepover they get to go home with a piece of artwork that they created with their staff or with the other kids,” Bishop says. “What that’s meant to families is unquantifiable. It’s an aspect that they never thought they’d be able to have.”
Bishop is a mom of a child who became medically fragile, so she has an intimate understanding of what it means to have your child create art.
“From a mom’s perspective, there’s no difference between a child and a medically fragile child. There should be no barrier there. However, life gives us barriers,” she says. “It’s part of our DNA, it doesn’t matter if you’re medically fragile or not. We want to provide the opportunity for every child to have that, regardless of ability.”
Some medically fragile children require special accommodations to be able to create art, which can limit their ability to create on their own. That prevents many of the children from creating as much art as an average child would in school.
“Our medically fragile children may not be able to hold a paintbrush like a normal child,” Bishop says. “We teach and train our nurses to think: ‘What can we do?’ We’re always looking at what’s possible. We want to know, ‘how do we say yes?’ in the world of medically fragile children.”
A Rosie Place for Children’s answer is HeARTworks Studio — an art studio to allow medically fragile children the opportunity to create. The studio would be dedicated strictly to the creation of art in all different mediums and would be designed to be an innovative and creative space.
HeARTworks Studio would be a separate building located on A Rosie Place for Children’s property. A move that Bishop says is intentional.
“We don’t want to add on to our current building, because we want to avoid becoming an institution,” she says. “Our mission dictates that we stay small, cozy, and home-like. We never want to become an institution.”
By keeping the studio separate, it helps to prevent A Rosie Place for Children from feeling like a medical facility or a hospital and more home-like, Bishop adds.
NEXT GENERATION FACILITY
Medically fragile children who attend A Rosie Place range from toddlers through age 21. Though, many times they don’t start attending until they’re a little bit older because it’s a bit of an adjustment for families to start trusting their child to someone other than themselves.
During the early years of operations for A Rosie Place for Children, the life-limiting conditions of the medically fragile children they serve meant that they were often not surviving into adulthood. Today, thanks to advancements in technology, medically fragile children are not only surviving, they’re thriving.
“The next step is to ask ourselves what happens after 21 and they’re still living with mom and they don’t want to be placed in an institution,” Bishop says. “Our families are interested in keeping their children at home, but they’ve got to have strong partnerships. That’s where A Rosie Place for Children comes in. It’s a very natural progression to go to the next generation, the young adult generation, of medical fragility.”
When medically fragile children reach adulthood, they “age out” of the system. That means they’re no longer able to receive pediatric services. Because these children are living longer, there’s a gap in care. For many medically fragile young adults, that means they have nowhere to go to receive services. That can leave many feeling lost and alone.
“There are facilities that will help adults and young adults with disabilities, but not medically fragile young adults,” Bishop says. “That’s where we can come in and say: ‘Let us continue to partner with you in your young adulthood.’ Why? Because they asked us to. If they ask, ‘Where am I supposed to go?’ it’s our responsibility to answer that.”
In response, Bishop has accelerated her plans to expand services to medically fragile young adults. She says she had planned to leave the expansion into the young adult space for the eventual next CEO. But an interaction between one of the children and staff prompted her to get to work.
A young woman, who is close to aging out, asked the staff: “Where am I supposed to go now?” No one had an answer for her. That’s when Bishop knew that the times had changed and it was important to act.
“That ignited a spark,” she says. “It made us stop to think about what we’re doing for those kids who are now becoming young adults who still might be home with their parents who are caring for them.”
Because Bishop doesn’t want A Rosie Place for Children to be an institution and to keep the original build as is, that means it’s time to look for new property nearby. It also means that the team at the nonprofit needs to innovate and envision what the next generation of medically fragile children will look like.
“We have the policies, procedures, and infrastructure. We know what it’s going to take and what we need to do to improve this space,” Bishop says. “Then we can dream and have the vision of what medically fragile young adults would need. Because it would be very different from what children need.”
Bishop is excited for the future of A Rosie Place for Children. She sees opportunity, and a chance to make a real difference in the lives of one of the most vulnerable populations.
“The cool part about the vision for the future is that it’s a testimony to how far we can dream. Why should we be limited to one area or another? We don’t limit that for other children,” she says. “These are steps of hope and confirmations that our mission is working, it’s successful, and that it’s inspiring for families. This is community and partnership.”