Tips Parenting

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.

Tips Parenting

Community Living looks beyond adult 'group homes'

In the community, but alone

New legal service aids Holland Bloorview families

Mia meets a butterfly

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

Does disability make you a less worthy transplant recipient?

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

This mom is a lifeline for inpatient parents

Postingan Populer

Label

Arsip Blog

Cari Blog Ini