Tuesday, December 16, 2014

Former client helps youth gain independence

By Louise Kinross
Gabriella Carafa is a social worker in our LIFEspan program with a long history at Holland Bloorview. Since she was a preschooler she's been a client in our neuromuscular clinic. As a teen she volunteered on our youth advisory and as a mentor and more recently she worked at our university-based Independence Program as a youth facilitator, mentor and social worker. BLOOM talked to Gabriella about how she got interested in working in children’s rehab.
BLOOM: What are your memories of Holland Bloorview as a child?
Gabriella Carafa: I always enjoyed coming here because it was such a welcoming place, even though the clinics were long and we’d sometimes spend the entire day (or what felt like the entire day for a child!). I didn’t come here often—once a year for my clinic appointment. I also went to the dentist here and had my orthotics made here.
BLOOM: What was the greatest challenge for you growing up with a disability and using a wheelchair?
Gabriella Carafa: There weren’t any challenges until I became a teenager. Then I started to realize my life will look different from my friends, who don’t have disabilities. They’re going to backpack around Europe and if I need to do that I have to bring someone with me—like my mom or an attendant. At that point I didn’t know how to manage being away from home for more than one night. I needed to learn skills to live independently and that’s why I went to The Independence Program (TIP) at Holland Bloorview.
BLOOM: What was the most important thing you got out TIP?
Gabriella Carafa: I learned that independence doesn’t mean doing everything for yourself. It means making decisions for yourself. So I could have an attendant come and help me with my morning routine so that it didn’t take three hours, but only one hour.
A lot of youth feel they have to do everything themselves and that if they don’t do it themselves, it doesn’t count. Once you go to college or university or are working or volunteering, you’re not going to want to spend three hours getting ready in the morning. At TIP they said: ‘Yes, you can do this now, but when you have a job and kids and are married, what time are you planning on waking up?’
BLOOM: What other things did you learn there?
Gabriella Carafa: I realized how much stuff I didn’t know. I was 18 and I didn’t know how to make a grilled-cheese sandwich. At home I was like ‘Okay, I want grilled cheese’ and my mom would make it. At TIP they said ‘Okay, so how do you make grilled cheese?’ It was a lot of practical things. The bigger thing was realizing I could still reach all my goals. My life would look different, but everyone’s life looks different. No one has exactly the same life as anyone else. I’ve still managed to accomplish great things.
BLOOM: How did you decide to become a social worker?
Gabriella Carafa: I chose social work because I wanted to be able to work one-on-one with clients and families, but also to tackle larger macro policy issues through advocacy. I’ve always wanted to work with individuals with disabilities and working here was great because it’s my way of giving back to the organization. Not only am I a social worker, I’m someone with a disability and someone who got services here. I feel I have a different understanding.
BLOOM: How does your firsthand experience aid you?
Gabriella Carafa: In social work we have something called ‘use of self’ where the therapist can bring parts of themselves into the equation. So if you have a good therapeutic ‘use of self’ you know when to share things, when it will help build a stronger therapeutic relationship, and when not to, so you don’t make it about you. People tend to feel like they can ask me questions.
BLOOM: What do you do in the LIFEspan clinic?
Gabriella Carafa: I see clients and their parents, often together. They’re coping emotionally with the transition to adult services. Most of the families feel like Holland Bloorview is their home and a lot of services are centralized here, or at SickKids, as opposed to in the adult system where services are scattered at different hospitals. Some of my work involves equipping clients and families with advocacy skills to navigate the adult system.
A lot of it is about funding, about connecting with the Ontario Disability Support Program or Developmental Services Ontario. They want to know what’s possible with housing options, relationships, sexuality.
I strongly encourage clients to go to our life-skills programs because I find youth often don’t know what they don’t know. Our life-skills programs can help them see what their strengths are and what they need support with as well as what their life may look like in the future.
BLOOM: Who do you work with?
Gabriella Carafa: I work with a youth facilitator, a life-skills facilitator and a nurse practitioner. We all work together as a team.
BLOOM: What’s the most challenging part of your job?
Gabriella Carafa: That I can’t change everything and increase the resources out there. In general I find that services are lacking and I wish there was more I could say or do. It’s hard when families say: ‘It’s not enough, what are we going to do?’ They’ll say ‘How does anyone live on the money you get from the Ontario Disability Support Program?’
I find families and clients want to be heard, they want to feel listened to. I focus on client and family strengths. Families are incredibly resilient. It’s not about empowering families—they already have it inside them. They just have to figure out how to use the skills they already have. They’re already powerful.
BLOOM: What do you like best about your job?
Gabriella Carafa: Being able to see a client and family at their first appointment and then over the next three years watch them become more comfortable with transitioning and building their skills. Sometimes clients will start coming in with their parents and then later they come in alone and if they’re able to do that, that’s what we want. In adult services they need to be able to manage appointments and problem-solve. I’m part of that journey with them.



I like to thank you and Gabriella for an incredibly thought-provoking and engaging interview, as she is truly someone that I would love to talk too.

With this said, I agree that families are resilient, but there also needs to a balanced approached from hospitals, government agencies, non-profit organizations and the private sector, in an effort to allocate adequate resources to adults with disabilities. We must remember that the question is no longer, "Will children with special needs survive adultolescence, but rather,'How will kids with disabilities prosper in adulthood?"

Nonetheless, one resource that is being overlooked by families is Direct Funding. Individuals with physical impairments are eligible for government assistance, at the age of sixteen, in an attempt to promote greater independence or independent living. Direct Funding can also be used in accordance ODSP.

We must never stop searching for answers!

Matt Kamaratakis