Mama and Dad

Home » Clinical-care

Tampilkan postingan dengan label Clinical-care. Tampilkan semua postingan

Community Living looks beyond adult 'group homes'

By Louise Kinross

Several years ago Chris Beesley wrote a BLOOM piece about how raising his son Mitchell, who has Fragile X and autism, had changed his life and career aspirations.

I met Chris last week in his new role as CEO of Community Living Ontario. I wanted to talk about options for housing for adults with intellectual disabilities.

Next week 100 of Community Living’s executive directors are coming to Toronto to brainstorm ideas that move beyond the traditional group home. The group will hear updates from an Ontario Developmental Services Capacity-Building Task Force on Housing, the federal program My House, My Choice, and a partnership between the Ontario Ministry of Community and Social Services and MaRS research hub, which issued a challenge brief to develop creative housing solutions for people with developmental disabilities.

Earlier this year an interim report from the Select Committee on Developmental Services noted there were 12,000 Ontario adults on a list for group homes with a wait of 20 years. TWENTY years.

So with my son now 20—as is Chris’s son—I wanted to hear about possibilities for change.

BLOOM: What is Community Living Ontario?

Chris Beesley: We support individuals and families in creating full citizenship for people with developmental disabilities. That means living where and with whom they want to live, inclusive education, work—either paid or volunteer—and recreational and social connections. Everyone needs to have friends.

BLOOM: Can you update us on new provincial funding for developmental services as a whole?

Chris Beesley: In the provincial budget $810 million dollars over the next three years was put into developmental services. The Ministry of Community and Social Services currently has a budget of about $1.7 billion. When this is rolled out in its entirety, it will bring the ministry's budget to a little over $2 billion per year. The net result is that there will be an extra $372 million annually in the system.

BLOOM: It sounds like a lot of money, but given the needs, it isn’t.

Chris Beesley: The money will be used to eliminate the wait list for Special Services at Home and Passport funding, and to cover new people coming into the system. They’ve also committed to 1,400 residential spaces.

BLOOM: But if 12,000 people are on a wait list, 1,400 spaces is just scratching the surface. What kind of residential spaces?

Chris Beesley: Some will be group homes, some will be individuals living with a family, like a foster situation, and some will be supported independent living. Our goal is to see government support individuals in their residence of choice in a flexible way. Eventually, we’d like to see residential dollars flow through Passport funding. Passport is individualized funding, but it’s currently capped at $25,000 and can only be used in the community, not for overnight support. Right now there are individuals who receive hundreds of thousands of dollars for residential support a year, but it flows through agencies. We’d like the option, where appropriate, to unbundle that from the agency and give it to the individual, so the individual is in control of where they live and who supports them.

BLOOM: What’s an example of out-of-the-box thinking?

Chris Beesley: Twenty five years ago 10 families came together to create an intentional community in Pickering. They accessed federal and provincial funding to construct a housing co-op with 115 units, seven of which would be occupied by their sons and daughters. They pooled the support funding their children received.

BLOOM: How has it worked out?

Chris Beesley: It’s worked very well. But the parents have had to do a lot of the heavy lifting. Those parents are now in their 70s and wondering how they’re going to keep this up. We’d like to see better coordination and planning across government ministries, municipalities and agencies, so parents aren’t the ones trying to make all the connections.

BLOOM: What are you discussing at your housing conference?

Chris Beesley: We want to hear from our executive directors about what they’ve done, or seen, in their communities, that’s promising. What’s working, what isn’t, what are the barriers and the opportunities? We want to get a lay of the land so we can look at moving beyond group homes. We want to identify practices and models that the government may want to invest in.

BLOOM: Is there anything new you can share with us?

Chris Beesley: I just learned about how Community Living London has been successful in finding investors who want to buy houses, so that the agency’s money doesn’t get locked up in the bricks and mortar. They have 30 homes and 21 of them are owned by investors.

BLOOM: Do these investors have a connection to disability?

Chris Beesley: No, not necessarily. They’re people who want to buy a house as an investment and they want a reliable tenant who won’t skip out, and we’re able to provide reliable tenants. Community Living London has become known as a facilitator for matching great tenants and investors.

BLOOM: How can parents learn about what comes out of your conference?

Chris Beesley: Once we’ve had the event we’ll write a report that we’ll post on our website There's good stuff going on, but our challenge is to create the space for this conversation and to bring all of the parties together.

BLOOM: What ideas are you thinking about in terms of Mitchell moving out?

Chris Beesley: We’ve thought about selling our house and buying two townhouses, so we're close: one for Mitchell and one for my wife Lori and I. Maybe we'll move near a college or university so we can find a student who can live with Mitchell for cheap rent, and in return would agree to be there every night and morning. Of course we'll need be part of the support, but this is a model that works for others so it's definitely something we'll explore.

In the community, but alone

By Liz Lewis

What does it mean to be part of a community? To recognize oneself and be recognized as a member of a social group, neighbourhood, or everyday world? As an anthropologist, these questions are standard fare. As the only sister of a woman with disabilities and deafblindness, they are deeply personal.

On paper, my adult sister has a great setup. Katie receives government funding to live in a home five minutes from my parents, with a lovely roommate and conscientious caregivers. Yet my sister lives in near total isolation, with no friends, activities or hobbies. And I know that as an adult with complex disabilities, she is not alone.

Katie has a genetic condition called CHARGE syndrome and needs 24-hour care. She’s never communicated verbally, although she knows some signs and her expressions of happiness and dissatisfaction are easy to read.

Katie can’t drive, cook, or really care for herself, although she can feed, bathe and dress herself with a little assistance. As the mother of a toddler, I'd say that she and my son operate on similar levels. Although I'd prefer to write something lighter and more optimistic, the truth is that Katie can’t do most of what able-bodied adults, or even children, can.

These complex disabilities mean that independence, communication and social connections look different for Katie. She finds agency in deciding what she’ll have for her snack, for instance, or whether she’ll relax with television or ask to go for a ride in the car. She asserts herself by refusing to participate in an activity or by showing joy and excitement over trying something new. She expresses love and caring by sitting quietly next to someone, giving hugs, or simply smiling. She likes to pat my son on the head, but has been known to pinch him when she’s fed up.

It can take time and patience for people to learn how Katie expresses her needs, preferences and desires. Yet again and again I have witnessed her win over caregivers, professionals and acquaintances with her unique charms. This makes it even sadder to me that when I visit my hometown, where I no longer live, my sister is largely alone.

Among adults with intellectual and developmental disabilities in the U.S., Katie is considered one of the lucky ones, meaning that she neither lives in an institutional setting nor in her childhood home. Her access to a high-quality home and staff ensure that my parents don’t bear the brunt of Katie’s lifelong caregiving needs, which will become more complicated as we all grow older. Still, as both an anthropologist and a sibling, I am disturbed by what I see.

When I visit my sister, I can't help notice her neighbours’ lowered gazes as they quickly shuffle from their driveways to their own homes; we've never exchanged a word other than “hello.” I can only imagine what the children and teenagers on the block think of her house. Katie does not go for walks—indeed, I don’t believe her street even has sidewalks—so her only time outside is when she walks the 10 feet to a waiting car to take her somewhere, typically to a park or the drive-thru of a fast food restaurant. Katie might be in the community, spatially speaking, but she is not there in any meaningful way.

Even more disturbing is my sister’s lack of activities and hobbies, which would provide a sense of accomplishment and give her new social connections. For several years, she loved attending weekly equine therapy classes, but then the program lost funding and eliminated its offerings for adults with disabilities. My family investigated volunteer options, such as sorting food containers or recycling for nonprofits or donation sites, but came up short. One well-known local organization even told us that they couldn't let Katie volunteer for them because she might harm herself, offering paternalism as a thinly veiled substitute for blatant discrimination.

The longer Katie lives like this, the farther she seems to withdraw into herself. She loses skills she once had and, at least to me, seems less able to connect with others. She develops essentially anti-social behaviours, such as eating with her hands instead of a fork, which would likely be interpreted as a product of her disabilities even though they are completely new. Although I now live in another state and can no longer participate actively in my sister’s daily life, I am consistently saddened by what I see when I visit. And this is in a state that rates average or above in disability inclusion. To be sure, the situation is far worse in many parts of the U.S. and elsewhere.

The inadequacies of the current independent living and social inclusion movement are more than disability rights issues. They also connect closely to individual safety and public health. We are all safer when we have networks of people—family, friends, coworkers, neighbors and acquaintances —looking out for us. Katie has very few of these. Similarly, there is increasing scientific evidencethat social isolation is bad for our health. How might it look if we as a society began to approach social engagement for people with disabilities not as a luxury, but instead as a pressing public health issue?

While great strides have been made in recent decades regarding the integration of people with disabilities, there's much more work to do. The need to rethink what we mean by inclusion is urgent. In the U.S., only 13 states plus Washington, D.C. have closed all of their institutions and, thanks to changes in federal lawsuch structures will soon be a thing of the past. According to United Cerebral Palsy’s most recent annual study, The Case for Inclusion, since 1960 over half of our existing institutions have closed, and 16 more are slated to shut their doors by 2016.

Why not seize this transitional moment to prioritize a new approach to community services and opportunities that make social inclusion a reality, such as increasing access to recreational and employment programs for adults with disabilities? The challenges are large-scale and will require a powerful effort to effect change in existing structures, practices and assumptions. It must no longer be acceptable to equate integration with community living services. Families, self-advocates and allies must demand a more holistic, respectful form of inclusion that acknowledges the social rights and needs of people with disabilities. I, for one, think the time has come.

For more on community living and inclusion, refer to the University of Minnesota’s Research and Training Center on Community Inclusion and to United Cerebral Palsy’s The Case for Inclusion 2014. The Center for Human Policy, Law, and Disability Studies at Syracuse University also has an extensive listof relevant resources.

Please follow Liz on her fascinating blog Disability Fieldnotes or on Twitter @LizLewisAnthro. Her last piece for BLOOM was Disability was home: From big sister to anthropologist.

New legal service aids Holland Bloorview families

By Louise Kinross

Your child has a disability and needs regular medical visits, but your boss threatens to fire you if you take the time off.

This is the kind of issue parents bring to Pro Bono Law Ontario at Holland Bloorview, a free legal service on non-medical issues that may compromise a family’s ability to care for their child with special needs. The service, led by our new onsite lawyer Hannah Lee, is offered to Holland Bloorview families with low to moderate incomes.

“How can a parent that’s being bullied by an employer or facing a hurdle in securing housing because their child’s medical needs are so great provide the best care for their child?” Hannah says. “I work with a network of lawyers and am here to give parents access to the information and resources they need. In most cases, we are able to advocate or find legal solutions. We try to shield parents from unnecessary stress so that they have the energy to care for their child.”

In addition to meeting one-on-one with parents, Hannah meets with lawyers working in several Ontario children’s hospitals on a systemic issues committee that “looks at bringing legal challenges to contest policy that discriminates against families with children with disabilities,” she says.

In Canada, “we tend to think equality means treating people in the same situation the same way,” Hannah says. “But sometimes equality requires treating people differently. This view of equality is called substantive equality. Because people have different needs and circumstances, we shouldn’t assume that just because they don’t follow what society normally requires of them that they are less capable or less deserving of respect and dignified treatment.”

Hannah has been onsite at the hospital two mornings a week since November, and has handled about 100 consultations with parents. She’s located on the main floor in the Family Resource Centre.

The service has had positive feedback, including resolving some cases where employers objected to a parent attending a child’s medical appointments. “When you have legal counsel involved, it tends to make employers accountable,” Hannah says. “They have a duty to accommodate to the point of undue hardship.”

Nadine Sunarich, social worker with Holland Bloorview’s child development program, has referred a number of parents to the service. “These clients have had issues related to immigration, Assistance for Children With Severe Disabilities funding appeals, family law, debts and unpaid taxes. They’re very grateful that this program exists and that it is onsite.”

In the past, Hannah worked as a defense litigator. She also volunteered in a legal-aid clinic for youth and in Pro Bono Law Ontario’s Child Advocacy Program, a free service that provides parents with lawyers to advocate for their child’s special education needs.

Since working with our families, “I’ve seen how resilient parents are in the face of adversity,” she says.

Holland Bloorview families who are struggling with a legal issue can e-mail Hannah at hannah@pblo.org.

Mia meets a butterfly

By Louise Kinross

Mia Pruder’s sparkly-gold nails clicked excitedly on her wheelchair tray.

The seven-year-old was in her hospital room at Holland Bloorview and a large, clear canister with a newly-hatched monarch butterfly was placed on her tray. It perched, with its brilliant orange wings tipped with white dots and marked with black veins, on the side of the container.

Several green chrysalides hung from the mesh lid, each with a strip of tiny gold beads on its case that looked as decorative as Mia's nails. At the bottom, a caterpillar striped black, white and yellow was crawling over a leaf.

Mia, who has an auto-immune disease and suffered a stroke following a surgery, eyed the suspended green shells intently.

The travelling canister is home to eggs, caterpillars, chrysalides and butterflies that intrigue child audiences within the walls of the rehab hospital.

“Children may not have the opportunity to get out of the hospital so it's great to bring nature indoors,” explains Effie Biliris, a youth facilitator who co-ordinates the Blooming Butterflies Program at Holland Bloorview.

“We use monarchs because their transformation is so visible,” says Robyn Sanford, coordinator of participation and inclusion at Holland Bloorview. “Every stage is distinct and the kids can see what's happening.”

The monarchs are ideal for use in a hospital because they pose no infection risk, are silent, require little care and don't disrupt patient care.

In addition to observing the creatures and learning about their care, children participate in related activities like making butterfly masks or butterfly cut-outs.

The caterpillar's metamorphosis into a shell, called a chrysalis, is so unusual a process that even Effie says “no words can describe it. The caterpillar's skin opens up and it goes inside. It then spins a web on the mesh at the top of the canister to hold itself upside down in a J-shape. When they shed their last skin, they wiggle and the skin coils up and falls off.”

Within 24-hours of emerging, the monarch butterflies at Holland Bloorview are released back into nature.

Mia was pushed in her wheelchair out onto a terrace where a butterfly was placed on the back of her hand. It waved its wings majestically, tickling her skin. She was told to make a wish and the butterfly, named Molly after her beloved pink cat blanket, flew away. The girl who loves pink and purple understands everything, her mother Heather says, but her stroke has taken her speech.

The butterflies are also released in the ravine behind the hospital in Spiral Garden, Holland Bloorview’s outdoor integrated arts camp. These ceremonies take place in Butterfly Garden, which is dedicated to the memory of Jamie Burnett, a beloved therapeutic clown who created his own magic for our inpatients before dying of a brain tumour in 2011.

The Blooming Butterflies Program is funded by the Norman and Marion Robertson Charitable Foundation and based on How To Raise Monarch Butterflies: A Step-by Step Guide for Kids by educator and photographer Carol Pasternak. Carol taught Holland Bloorview staff how to care for the butterflies and release them with the help of clients. She raises Monarch butterflies with her family in Toronto.

Photos by William Suarez

Peer-led groups treat distress in moms of kids with autism

By Louise Kinross

Parent-led groups in mindfulness meditation and positive psychology significantly reduce stress, depression and anxiety in mothers of kids with developmental disabilities like autism, according to a July 21 study in Pediatrics.

Two-hundred and forty-three mothers—65 per cent with children with autism and the rest with other developmental disabilities—were randomized into either a Mindfulness-Based Stress Reduction group using breathing exercises or a positive psychology group that focuses on cognitive exercises like curbing negative thoughts and practising gratitude.

Six weekly, 90-minute sessions were run by mothers of children with disabilities. They received four months of training and were supervised.

At baseline, 85 per cent of participants had significantly high stress, almost half were clinically depressed and 41 per cent had anxiety disorders.

Both treatments led to significant reductions in stress, depression and anxiety and improved sleep and life satisfaction. The drops in depression and anxiety were large. Mothers in the mindfulness group had greater improvements than those in the positive psychology group. Only one treatment difference was seen in the disability groups: Mothers of children with autism improved less in anxiety. Mothers continued to improve or maintain gains during a six-month follow-up.

Researchers suggest that further research should look at groups that incorporate aspects of both mindfulness and positive psychology.

“Our research and findings from others labs indicate that many mothers of children with disabilities have a blunted cortisol response, indicative of chronic stress,” says lead investigator Elizabeth Dykens, director of the Vanderbilt Kennedy Center for Research on Human Development and professor of psychology. They also have reduced immune function and shorter telomeres—the protective cap on the ends of strands of DNA—which indicates speeded up cellular aging.

“Compared with mothers of typically developing children, mothers of children with neurodevelopmental disabilities experience more stress, psychiatric problems and poorer health,” the researchers say. Although the “cumulative stress and disease burden of these mothers is exceptionally high…policies and practices primarily serve the identified child with disabilities.”

The researchers call for more research on how trained peer mentors can work with professionals to address unmet mental health needs of mothers of children with developmental disabilities.

Does disability make you a less worthy transplant recipient?

Two little girls with genetic conditions that include intellectual disability needed a life-saving organ transplant.

One, in Philadelphia, needed a kidney. The other, in Chicago, needed a heart.

The first, three-year-old Amelia Rivera with Wolf-Hirschhorn Syndrome, was turned down for a kidney transplant in 2012 because of her ‘mental retardation,’ according to her parents. “She is not eligible because of her quality of life—because of her mental delays” the parents said a nephrology doctor told them.

Special-needs parents lit up the blogosphere in protest and over 50,000 people signed a petition at change.org asking the Children’s Hospital of Philadelphia (CHOP) to reconsider its decision. All the major media networks ran news stories on the case and CHOP reversed its decision. Last year Amelia received a kidney transplant from her mother and is thriving.

The second girl, a baby dubbed “Annie Golden Heart” on a Facebook page run by her parents, had Down syndrome. She was in heart failure, but was ineligible for a new heart because of her disability. Last week, she died at age two. Despite her Facebook page, Annie's story didn't garner the media clout to influence hospital policy like Amelia's had. I wonder how her parents explained her death to her two older sisters?

This change.org petition questions why children with Down syndrome are not considered candidates for organ transplants. It has almost 40,000 signatures, but it hasn’t caught the imagination of the media.

Last year CNN reported on a five-month-old baby with a heart defect who was okayed for a heart transplant, only to have this decision reversed two days later when it was discovered that the child had a genetic condition. The doctors said his genetic condition compromised his immune system, making him a poor candidate for transplant, and told the parents to take him home and love him till he died. His mother went online and researched the syndrome, reading studies and contacting the expert her son's syndrome is named after. The study authors and the expert said that the condition is not associated with immune problems and is not a reason to deny the child a transplant.

The syndrome is, however, associated with intellectual disability and there’s a long history of categorically excluding people with intellectual disability from eligibility for transplants; they’re not seen as worthy of these scarce resources.

The Autistic Self Advocacy Network has published an excellent toolkit on transplant discrimination based on disability.

In its Guide for Clinicians the authors note that “the most common barrier is the misconception that people with disabilities—especially those with intellectual, developmental, or psychiatric disabilities—are unable to comply with post-operative treatment regimens and that, as a result, people with disabilities have a lower likelihood of transplant success. In addition, providers may incorrectly assume that people with disabilities have a lower quality of life than people without disabilities and therefore would not benefit as much from life-saving transplants…”.

The guide includes recent studies that show that with adequate post-surgery care, people with intellectual disabilities have survival rates for kidney and heart transplants that are comparable with those in the general population.

The guide includes case studies, like the one of a 9-year-old boy with autism who needed a heart transplant. Two transplant centres refused to even evaluate the boy, who types to communicate, based on his disability.

In its toolkit on transplant discrimination, the Autistic Self Advocacy Network says that “as early as 1992, the U.S. Department of Health and Human Services took the position that deeming people with disabilities to have a lower ‘quality of life,’ and refusing health care on that basis, would violate the Americans with Disabilities Act.”

It goes on to say that “Clinicians’ estimates may, as a result of their own ‘horror of handicap,’ dramatically undervalue the actual quality of life of disabled patients. In reality, people with significant developmental and intellectual disability—including those who need assistance with basic tasks, those with co-occurring physical disabilities, and those who do not communicate using language—may lead long, rich, and fulfilling lives in their communities. Moreover, patients with disabilities who received organ transplants may experience marked improvements in quality of life.”

Ironically, two days before “Annie Golden Heart” died last week, a state lawmaker from Philadelphia introduced legislation to end discrimination against people with disabilities in need of organ transplants. The bill, spurred by the fight of Karen Corby, whose 24-year-old son Paul, with autism, needs a heart transplant but isn’t eligible, is called Paul’s Law. “...To find out that he is not a candidate for a heart transplant—which is the only cure—because he's autistic, is the most terrifying thing a parent can go through," Karen Corby said.

Last year, Dr. Art Caplan, a bioethicist writing for MSNBC online summed up the situation beautifully: “Children with intellectual disabilities do not appear on transplant waiting lists with the frequency that should be expected…There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant. But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases.”

The balancing act: Children's rehab is about truth and hope

Dr. Anne Kawamura is a developmental pediatrician in Holland Bloorview’s child development program, working with children with cerebral palsy, autism and other developmental delays. She was hired 10 years ago after completing her fellowship in developmental pediatrics here. In addition to her clinical work, Anne directs the University of Toronto program for pediatricians who train for two years to become specialists in working with children with disabilities. She has three children of her own.

BLOOM: What led you to working in children’s rehab?

Anne Kawamura: A lot of it stems from the fact that when I was in medical school I had a chance to work with children with autism. As part of a research project with Dr. Wendy Roberts I went into the community three days a week as a volunteer to do intensive behavioural intervention with two young boys. It was really hard and I didn’t know what I was doing, though I had some basic training.

The greatest part was just having the connection with both of these kids and to see that even though things were really challenging for them and their families, that you can build a relationship with these children. That was very meaningful for me. People often misunderstand that. You can really get to know a child with autism and they can get to know you in their own way.

I also felt firsthand some of the judgment that families experience. One of the boys banged his head and once he was so upset he gave himself a black eye. I took him to the park and people looked at me, with a child with an injury, as if he’d been abused. I got a sense of how it felt to be in the parent’s shoes.

BLOOM: What is the most challenging part of your clinical work?

Anne Kawamura: I think the hardest days are when families ask me really hard questions, like ‘will my child walk or talk?’ and I know the answer is that the child may never walk or talk. They want something and I can’t give it to them. It could be certainty or a guarantee, or even that they want more therapy, and we don’t offer that level of therapy.

BLOOM: When a parent has a question about a child’s abilities in the future, how do you address that in a helpful way?

Anne Kawamura: You have to balance being truthful about what you know about the condition with hope, and leaving room for change. There have been times when I’ve been really surprised to see what the outcome is. When I was first working here I was on the brain injury team. I’ve seen some really dramatic changes there that I wouldn’t ever have been able to predict. So it’s important to leave the door open.

BLOOM: When I speak with medical students they often ask how they can convey difficult news to a parent in a way that won’t be upsetting, as if there’s a ‘right’ way of doing it.

Anne Kawamura: You can’t follow an algorithm. I see that with our fellows who want to know the right way to approach this.

One of the most important things we need to teach is that it’s a conversation that goes back and forth. You never know what will come back from the parent, so you need a great deal of flexibility.

There’s no perfect way of giving a diagnosis, there is not. And you can make mistakes, you can make a misstep, but the idea is that you can recover from that. You can back up and redirect and reestablish a good connection with the family.

BLOOM: What advice do you give fellows when giving a diagnosis?

Anne Kawamura: I try to teach them to find the strengths in every child, and to focus on those strengths. But they have to truly believe the child has strengths, and to help the parents see those strengths if they don’t already. When you interact directly with a child during an assessment you get a sense of what they’re doing really well, and how those things may help them in moving forward in an intervention or in their day to day life. Focusing on strengths is important in providing a window of hope.

BLOOM: I think it must be difficult for fellows to learn that what’s helpful to one parent in conveying a diagnosis may not be helpful to another, because each parent is so unique.

Anne Kawamura: My gut feeling as a health professional is that when someone is upset or suffering I want to fix it. And some of the most useful feedback is that we don’t need to fix it, we may not be able to offer parents something that changes how they’re feeling. We just need to be there. To listen. To acknowledge how challenging it is. To be an ear. The most important thing is that it’s okay to take the time to really hear where the parents are at, to give them an outlet to express how they’re feeling.

Something exciting we’re doing is running a new simulation program so fellows can practise giving a diagnosis with a standardized patient. We have a family leader who has a child with autism who’s been part of building these practice scenarios and giving feedback to fellows. It’s been amazing having this parent’s perspective.

She can tell us how things felt for her as a parent, and how we could have done something differently. I don’t have a child with autism, she does, and having that perspective is really important. The other important thing is practice and learning how to navigate situations.

Part of why I enjoy what I’m doing is that it’s always a challenge and there’s always more to learn. I’m always thinking back to what I could have done differently to make things easier or better. We’ve done two sessions of simulation so far but we hope to be able to offer it to our fellows regularly during their two years of training.

BLOOM: Have your views about disability changed since you began 10 years ago?

Anne Kawamura: When I first started out I wanted kids to get as much therapy as possible. We all have that notion that more therapy is better. Over the years, through talking with colleagues and seeing a lot of kids, I see that there are other equally important things in life, in terms of going out with your kids and playing, having fun with your kids.

I try to talk to families more about seeing their whole child, not just focusing on one thing, like walking, but to focus on the other aspects of their child’s life where they’re doing well and where they also need support. I try to help them focus on all aspects of their child’s development.

BLOOM: Have you seen any changes in children’s rehab?

Anne Kawamura: I think there’s more emphasis on participation, even in the research realm of things. Before, we were focused on ‘what’s wrong,’ for example, treating the stiffness in the muscle. Now we’re still treating the stiffness in the muscle, but we’re more interested in how treating it influences what the child can do, how they participate in an activity and their quality of life.

BLOOM: I assume your job is stressful because supporting families takes time, but your time is limited?

Anne Kawamura: Peggy Curtis is the nurse I work with and we work really closely together. We have a schedule and demands to get our wait list down, but we try to make it work each day, one step at a time. We never know when a child and family will need more time, and we want to be flexible to meet the needs of the families coming that day. So if someone needs more time, we figure out a way to make it work, even if it means bringing them back for another visit.

BLOOM: What are your hopes for the future?

Anne Kawamura: Right now in addition to my clinical work I’m doing a lot of education overseeing our program for pediatricians who are training to become developmental pediatricians. I’m also doing a master’s in Health Professions Education, which I do long distance through the University of Illinois at Chicago.

I love what I do and I don’t ever want to leave the clinical side. I like working with families and the kids I get to see and follow up over time. To see them growing, changing and maturing is the part I enjoy. And I love teaching too.

BLOOM: If you could give yourself advice when you were starting out, what would you say?

Anne Kawamura: I think having a good mentor in the field is important, in terms of balancing workload and the rest of your life.

There are stressful cases where you feel you don’t know how to help or how to resolve a situation and having someone to talk to is really important. Earlier on I had mentors like Darcy Fehlings or Golda Milo-Manson. And now I could still knock on their doors, but I have other people that cross disciplines, like Peggy and the other colleagues I work with.

You need many mentors and they will be different people at different times.

This mom is a lifeline for inpatient parents

In 2006, Lies Ferriman’s 15-year-old son Sasha sustained a severe brain injury while snowboarding. He was in a coma for 10 days and spent seven months at Holland Bloorview in intensive rehab as both an inpatient and outpatient.

Five years later, Lies (above) became a family mentor at the hospital, sharing her firsthand experience with other parents of children who are inpatients.

“Holland Bloorview was like a lifeline when we were here,” Lies says. “So I wanted to give back to other families who are experiencing similar things. I want to impart the fact that you’re in this horrible situation at the moment, but it will get better. It will become a new normal.”

Once a week Lies and a family support specialist invite parents of children who are inpatients to meet in the Family Resource Centre. “We go onto the unit and knock on doors and introduce ourselves and invite them downstairs,” Lies says.

Each meeting is an opportunity to share practical information—like resources and funding available in the community—but also to talk about how families are coping with their child’s rehab and “to listen to any burning issues the parents have,” Lies says.

“There’s a sense of community and a sense that you don’t feel so alone. We try to have the topics very broad so that they address a variety of disabilities and there are nuggets parents can glean that are useful for their child. I’m also amazed with the different cultures and religions we get around the table—it’s like a cross-section of the world. And it’s useful to have all of these different perspectives.”

Lies says parents often feel comfortable confiding their concerns and experiences with a parent who’s walked in similar shoes. “They tend to be completely open with us.”

She says she needed a few years’ distance from her son’s injury before she was ready to support families. “You need to be emotionally ready,” she says. “You need to have some distance where you can look back, and your feelings aren’t still raw.”

Lies says the qualities she brings are an ability to listen to family stories and to share part of her story when it relates to a situation which a parent may bring up. “I’m very passionate about my role. And it’s a reciprocal experience. I get so much out of it.”

Lies has logged over 700 volunteer hours in her work as a Holland Bloorview family leader. In this video she talks about what it's like to cope with a child's acquired disability.

To find out more about our family leadership program, call 416-425-6220, ext. 6420.

This hospital trains and hires students with disabilities

Project Search partners with businesses, schools and community agencies to run nine-month skills training programs for high school students with intellectual disabilities. In 2013, the project, which began at Cincinnati Children's Hospital 18 years ago, had grown to include 285 business sites worldwide and 69 per cent of graduates that year got jobs. The project trains students in complex but routine jobs from sterilizing surgical equipment and making defibrillators to working on a carpet-making production line. BLOOM interviewed Erin Riehle (photo centre), director of disability services and Project Search at Cincinnati Children’s.

BLOOM: How did you get the idea for this project?

Erin Riehle: I’m a critical-care nurse and I used to be the director of the emergency department here at Cincinnati Children’s. One day I was sitting in my office, right off the waiting area, and I looked out and noticed that a lot of the people sitting there waiting were people with developmental disabilities.I’d seen a young man with disability bagging groceries in a grocery store and I thought gosh, how many people with intellectual disabilities do we train and hire here?

I called our chief financial officer and I asked how much money do we make by serving people with developmental disabilities? I learned it’s a substantial part of our revenue at the hospital. Then I called our head education officer and asked how many training programs we had. It’s over 60, but not a single one is about training people with disabilities.

I checked with HR and learned we hadn’t intentionally hired a person with an intellectual disability to do any of our jobs. We had lots of volunteers who had developmental disabilities but no employees. It didn’t seem right.

I had some open jobs and I was willing to see if a person with a disability could do them. I invited the head of special education from our school district and someone from our county board of developmental disability to visit with an idea of starting a training program.

BLOOM: You said in a video that you felt children with disabilities who received services at the hospital deserved to see staff with disabilities working there?

Erin Riehle: I think if we’re going to make a lot of money by providing their medical care and our mission statement is to ‘change the outcome,’ then for people with disabilities we should be training and hiring them just as we train and hire other people. It turns out that our families love it and we get so much positive feedback about how much it means to them to see folks working at the hospital who look like their kids with disabilities.

BLOOM: How many people with disabilities are employed through Project Search today?

Erin Riehle: We have 58 people with significant intellectual disabilities working here at Cincinnati Children’s and they’re in a wide variety of jobs. We also have another six programs in the Cincinnati community we manage and each trains about 12 young people a year. Not all kids with disabilities want to work in hospitals so we partner with businesses to offer other programs in a university, a bank, a retirement centre and the sheriff’s office.

BLOOM: And the program has been modelled around the world?

Erin Riehle: Today we have about 285 programs. About 250 of them are in the U.S. and the other 35 are in England, Ireland, Scotland, Canada and Australia. The one in Canada is in Winnipeg. Overall we serve about 2,750 young people a year and 69 per cent go on to get jobs. Every day we get interest from other cities and countries who want us to teach them how to replicate our model.

BLOOM: How old are Project Search students?

Erin Riehle: We have two versions of the program. In one, we partner with local high schools, so it’s a high-school transition program and those students are aged 18 to 21. But we also run the same program as an adult model and typically those students are aged 18 to 30.

BLOOM: How does the program work?

Erin Riehle: The students are here for a school year of nine months. We break it into three 12-week rotations, and each young person goes to a department by themselves, depending on what they’re interested in, and they begin to learn skills, not jobs. We might teach a skill using a video, or doing a picture board and being there with the student until they’ve mastered it. We took all of the manuals used by departments for orienting staff and added pictures to them, because many of our students don’t read or write. So anyone who gets trained in that department, whether or not they have a disability, uses the same books. It’s one of many examples of a modification made to help a person with a disability that helps everyone.

BLOOM: What are some of the hospital jobs students learn?

Erin Riehle: Hospitals are a microcosm of the working world and anything you want to learn you can do in the hospital and then take back out into the community. We have people doing sterilizing of the trays used in surgery, stocking all of the materials used in patient rooms and departments, and transporting patients. We even have a guy who works in pathology in the morgue, changing chemicals in tanks and doing tissue slides. In general, we find people with intellectual disabilities tend to excel at jobs that are very hard, very complex, but also routine.

BLOOM: In your video there’s a participant who sterilizes surgical trays. Can you explain what her day would look like?

Erin Riehle: That’s Jill. She comes in, puts on her scrubs and safety gear and goes to her station, just like everyone else in that department. She has to do at least 30 trays a day, and each tray has 100 to 200 instruments that have to be put in the exact order used by the surgeon, from first to last. I’ll be honest with you, if Jill had left high school without any skills and applied for that position without knowing how to do it, there’s no way in the world she ever would have gotten that job. But if we bring her in while she’s still a high school student and have nine months to teach her the parts of a skill, she can do it as well as anyone else.

BLOOM: If the student is hired when the program ends, do they make minimum wage?

Eric Riehle: They're hired at whatever the customary wage is for a position. They have the same job description and make the same salary as anyone else doing that work. We know that for 2013, 69 per cent of our grads were hired, about 40 per cent by the host business, and 60 per cent elsewhere in the community. It's better than most transition programs, but we're still failing 31 per cent of the time.

BLOOM: Is it challenging to get regular staff to buy into the program?

Erin Riehle: We go out to businesses and explain what we’re trying to do and almost never do we have a business that says no. Our model works and businesses really like it. We do tons of education and talk to the staff during brown bag lunches and we rarely have problems with staff.

BLOOM: So what is the greatest challenge?

Erin Riehle: At Cincinnati Children’s and at every other business site we have several partners who work together to make the program happen. This includes the school district; a community rehab agency; Vocational Rehabilitation, which is a federally-run funding program; and an agency for people with developmental disabilities.

The biggest challenge is getting the partners to work together. We require the teams to braid their funding and expertise and resources. We prescribe the role that each will play. But even though they all have the same goal of helping people with disabilities find jobs, they have their own bureaucracies with their own rules and measures of success. It’s very difficult to get them to collaborate.

BLOOM: What kind of impact have you seen on Project Search graduates?

Erin Riehle: To get up every morning and come in to a workplace and have a purpose and be responsible for something that is not just made-up work, that if you don’t do it it’s going to have a ripple effect, these are powerful things. It is life changing.

We have at least eight folks here at Cincinnati Children’s that have gone on to get married. We have a ton of people who, because of their paycheck, are living on their own and have bought a condo or are living with someone they work with. We have lots of folks spending money and paying taxes and they have friends.

One thing we see, which is a concern and deserves further study, is that in 18 years we’ve had 10 deaths among people with developmental disabilities who work here at the hospital and that’s way out of proportion to our general work population. That has really jumped out at us. Something is getting missed in their health care.

BLOOM: What is the impact on staff?

Erin Riehle: It’s massive. It changes the minds and hearts of doctors and nurses. Instead of a doctor seeing every kid with cerebral palsy as a person that just needs to be seen, he or she starts thinking ‘This kid really could work. I need to make sure I link him up with the right services.’

At least once a week we get a call from a nurse on a unit who says ‘I’ve got a patient up here and I talked to the parents about Project Search and they’ve never heard of it. Can I send them to you to talk?’

So nurses, instead of seeing kids with disabilities as patients, and impersonal objects, they begin to see every kid with a disability as a person who could work, as a valuable person. It really changes the whole care experience of patients with disabilities and their families.

And I hear from doctors all the time that if you’re the head of the autism or Down syndrome clinic and you have some of your patients working here and they’re seen by other families, that makes those families think you’re a better doctor.

It makes them feel more confident in the care they’re getting and it makes them see themselves differently and have higher expectations for their sons and daughters.

The doctor who runs our clinic for cerebral palsy said there was a woman with a child with cerebral palsy who was working on a project here at the hospital. And one day, she said, ‘I saw Matt again, he must be really sick.’ Matt is someone who has cerebral palsy and she made the assumption that he was there because he was sick. But he was here because he was working.

BLOOM: Are you funded federally?

Erin Riehle: We don’t get any federal funding. I still work for the hospital and we have a team of people who go out to set up programs. The way we get funding when a group wants to start a program is that they sign a license agreeing to our rules and outcomes, and they pay for technical assistance to replicate the program. We charge $15,000 per site, which covers all of our expenses and salaries and time going in to work with teams.

A refuge for parents caring for kids in hospital

Once a week Claire Stoten sits on a meditation cushion and focuses on her breathing. “It forces me to stop doing all of the jobs—the organizing, e-mails, research and care for my son,” she says, sitting in her son Felix’s inpatient room at Holland Bloorview.

Felix, 13, who has a neuromuscular condition, had a 10-hour surgery to fuse his spine at the end of March. Prior to that his spine was so curved he couldn’t sit up, his mother says.

For the second week in a row Claire has participated in a 40-minute mindfulness session for parents of inpatients and daypatients. Without the structure of the hospital program, she says, she'd never set aside that time for herself.

“It comes back to that analogy of when you’re in the airplane, the parent is supposed to put the oxygen mask on first, because if they don’t, they may pass out before being able to help their child,” says Anna Marie Batelaan, social worker in the brain injury rehab unit at Holland Bloorview. Anna Marie has been leading a weekly mindfulness session for parents for four months. “They need to take care of their own needs to have more ability and energy to care for the child.”

Mindfulness involves paying attention to the present moment, Anna Marie says. “It’s giving yourself permission to focus on you and focus on the here and now, without judgment. Our minds are constantly busy and this is one way to pause and catch your breath and refocus.” Anna Marie says our bodies are built to focus on the negative, but we can retrain our brains to notice and appreciate the positive.

“This is new to a lot of families, so we’ve been doing multiple short sitting meditations of three to five minutes,” Anna Marie says. “Parents learn how to focus on their breath or we do a body scan and they send loving energy to different parts of the body. We’ve also done walking and eating meditations.”

Research on mindfulness shows that it reduces worry and stress, boosts working memory and focus, makes you less reactive and more adaptive, and improves relationships. “There’s a lot of evidence that it works with anxiety and depression and posttraumatic stress disorder,” Anna Marie says. “A lot of our parents are dealing with the posttraumatic stress of witnessing a child’s accident or illness that changed their child so dramatically.”

Anna Marie says the greatest challenge is to get parents out for a first visit. “When their child is hospitalized they tend to put their own needs way down on the list.”

She usually starts parents with meditations that focus on the breath because “they’re easy to learn and can be done anywhere and anytime. We talk about how you can fit this into your day. A parent will say ‘I’ve done it on the toilet.’”

Claire says she leaves the mindfulness session “feeling relaxed and peaceful.” Then, as a way of expanding the session, “I go to the cafeteria for 20 minutes and have a coffee. And I don’t let myself start any jobs.”

Here are some tips for beginning meditators. Anna Marie can be reached at 416-425-6220, ext. 6353.

Parents at centre of online training to bring Zoey Faith home

By Louise Kinross

Home.

It’s Thunder Bay, and it’s where Amanda Mintenko has always wanted to care for her 15-month-old daughter Zoey Faith—along with brother Liam, 2, and Dad Mathew.

But Zoey Faith was born with spina bifida, paralysis of her vocal chords and apnea, so she requires a breathing tube attached to a surgical opening in her neck to keep her airway open. “When she gets anxious her vocal chords close, so she would suffocate,” Amanda explains.

“At first we were told Thunder Bay wouldn’t accept Zoey as a patient and we’d have to move to Toronto because our local hospital had never cared for a baby who used a ventilator. I said no and wrote advocacy letters to our MP, lawyers, the child advocate and did anything possible to ensure that we got the proper resources at home. I fought for this and I want to make other parents aware, so that another family like ours isn't told they have to move.”

The transition home for Zoey Faith included a seven-month stay at SickKids and a four-month stay at Holland Bloorview, where videoconferencing was used to train nurses and respiratory therapists in Thunder Bay.

Using Ontario Telemedicine Network’s videoconferencing, Zoey Faith’s parents and the team at Holland Bloorview trained staff in Thunder Bay on the baby's tracheotomy care and how to provide her daily physiotherapy.

“Having the family show Zoey Faith's care right at the bedside helped the Thunder Bay team visualize what they would need to do,” says Maryanne Fellin, a clinical resource leader at Holland Bloorview. “It also allowed the Thunder Bay team to get to know the family, see how Zoey Faith would react in a real setting and then have a discussion during the videoconference.”

Amanda says she and her husband Mathew learned how to care for their daughter's tracheotomy, ventilator and stomach-feeding tube quickly, “Because we were so determined to come home. I had a two-year-old at home with his grandmother and I hadn’t seen him for 11 months.”

Amanda says the best part of being at Holland Bloorview was a month of “care by parent” where Amanda and Mathew did all of Zoey Faith’s care on their own, only calling a nurse if there was a problem.

“It was fantastic. We knew what we had to do. We had our privacy and it was nice knowing there was someone there to assist when we needed help. At home, we do the work all day, so we have to be able to tell when anything is wrong.”

In addition to using videoconferencing to train health professionals in Thunder Bay, the technology allowed staff there to participate in monthly family team meetings at Holland Bloorview. “Thunder Bay had homework to do and attending the family team meetings meant we could assess how much progress they had made,” Amanda says.

Amanda and Mathew eventually went home first to get ready for Zoey.

The one-year-old then flew to Thunder Bay with a Holland Bloorview nurse and respiratory therapist. “She loves to fly and it went very smoothly,” Amanda says. “I was comfortable knowing it was staff we knew who were coming with her. I felt she was safe with them.”

Amanda says she loves having her family together at home. “I’ve had a chance to start putting the kids into a routine and going for play dates and we also love having our privacy.”

Amanda says Zoey Faith is a happy, outgoing, playful baby who loves life. The family has seven hours of nursing-care every night so that the parents can sleep. The rest of the time Amanda is the primary caregiver. “I love it. She doesn’t require too much because she’s a very content, happy baby.”

Amanda says she was able to demonstrate Zoey Faith’s care hands-on to local staff in Thunder Bay when the family returned. But she likes knowing that Holland Bloorview is just a call away. “If I have a question I can’t answer I’ll call and speak to a respiratory therapist and they’ll share their insights.”

Why are disabled teens more likely to be alone?

By Louise Kinross

Life skills staff at Holland Bloorview presented their early findings from a review of 56 studies on friendship for youth with disabilities at a hospital Crosstalk last week. The event brought together staff, youth and a parent speaker.

Sarah Keenan, life skills coach, noted that research has shown that friendship is associated with life satisfaction and good mental health in the general population, while loneliness has negative impacts on our immune system and heart health.

Yet children with disabilities tend to have fewer friends and smaller social networks than their peers. Sarah referenced an American study of 11,000 teens that found that “over 50 per cent of students with autism had no contact with friends outside school and were never invited to spend time with friends.”

Studies find that typical youth are more open to having a friend who has a physical disability than one with an intellectual disability, she said. However, interactions with youth with disabilities in general are often superficial on the part of typical youth.

There is no one definition of friendship and clinicians and researchers want to know more about how youth with disabilities define a good friend, Sarah said.Research shows that friendships of youth with disabilities have some unique characteristics.

For example, while most teens move away from their family in pursuing a growing social life, youth with disabilities continue to need parent support to keep friendships going. Friendships of people with disabilities, particularly those with autism, tend to be less intimate than their peers. And youth with disabilities have less social contexts in which to develop friends because issues with transportation, accessibility and safety make it harder for them to get together outside school.

Most studies about friendships for youth with disabilities focus on the school environment and few look at connections in the community, Sarah said.Holland Bloorview recently ran a 14-week friendship development program called PEERS.

The program, originally designed for youth with autism, was adapted for teens with physical disability and called Teen Talk. Teens and parents participate in separate 90-minute weekly sessions.

A key lesson learned “is that it’s not enough to focus on teaching skills, we need to give youth opportunities to practise and generalize these skills in school and in the community,” Sarah said. In addition, “parents are important partners in helping their children develop skills and make and maintain friends.”

A parent said the program broke down complex skills for her daughter and gave her the chance to practise them. She noted that friendships for youth today are less face to face and more online.

Parents in the program found school inclusion to be too challenging for many youth, the parent speaker said, and that their children had had greater success making friends in separate programs for kids with similar abilities. “It takes time to get to know our kids and how many typical individuals take the time to get to know the person underneath?” she asked.

The parent said that it’s during the teen and young adult years that youth most need support in creating social networks. “Don’t cut off services at age 18,” she said. “And don’t leave it up to parents,” who already have their hands full addressing a multitude of needs in their child.

“A great way that I made friends was by getting involved in clubs and places in the community and volunteering,” said Farrah Sattaur, a young adult who spoke.

“I think parents should make it a point to connect with their child's teacher because parents know their child best. They should also focus on their child’s abilities, rather than disabilities, and try to figure out their child’s interests. Sometimes it’s hard to figure out a child’s interests. Look for clues, like if your child is always happy around your dog and looking for the dog.

“Teachers should connect with parents, EAs and special-ed teachers to make their programs and activities more accessible. For children and youth who find it a challenge to make friends, just be yourself and believe you can do it.”