Issue 77
September, 2016

SEAC Updates

The Ombudsman Report

We all struggle with advocating for our children; the gaps between their needs and the services available can become a minefield.  For many of us, this becomes a full-time job: scheduling various therapies and tracking down funding, programs and workers to give our children the time and support they need.  We work with schools and government agencies to allow them to flourish in the best atmosphere possible.  We know the cracks in the system are there, sometimes sneaking up when we least expect it. 
Up until recently we have been aware of the shortfalls of the system, with very little hope of changing it.  The Ombudsman of Ontario has made an investigation into the Ministry of Social Services’ response to situations involving adults with disabilities in crisis, and has been found very lacking, placing adults in crisis in dangerous positions involving abuse, abandonment and institutionalization. 
Admittedly, the focus of the study was on adults, however our children will all grow up.  The study paints a bleak picture of the system as it currently stands:  a system that will allow adults in crisis to be hospitalized, criminalized or marginalized as a result of a number of failings, including inconsistency, lack of ministerial coordination between departments, and failure to prioritize long term solutions over cheaper, short-term band-aid solutions.
Despite the negative connotations, the report is a positive one.  A comprehensive and detailed report generated by the office of the ombudsman not only brings light to an issue that desperately needs to be examined, but also places pressure on the institution for improvement.  The report contains the response of the Ministry within, laying out plans for the future as well as change that have already taken affect.
We can only hope that the changes made to the system during these transition years sets up the kind of infrastructure that will catch our children if we fall.
You can read the Ombudsman Report, Nowhere to Turn here.

What's Happening at WRFN

                 
  
              
      
                       

            
        
             

The new bus service to The Family Centre & Family and Children Services is running! 

You all have heard the good news of the new bus service to The Family Centre and Family and Children's Services (200 Ardelt location) starting from September 6^th. This new route (#78) will run Monday to Friday with the first trips departing at 8:15 am from Forest Glen Plaza. The last trip is scheduled to depart at 8:25 pm and would return to Forest Glen Plaza by 8:40.pm. Service will be available on a 30 minute frequency throughout the day. Route 78 will operate using a smaller GRT busPLUS vehicle. These 19 seat vehicles are fully accessible with a lift and wheelchair spaces.  Click HERE for more information.

Young Adult Update

Hi All,
It’s September! Can you believe it? Time for things to start picking up again! Here are the activities we have to celebrate the start of what many think of as the “new year.”
Monday, September 12, 7 to 9:30 P. M., The Studio (109 Ottawa Street, Unit B, Kitchener): As a goodbye to summer,” we will be watching the film “A League of Their Own (the film is two hours and eight minutes long, which is why the evening will go until 9:15. We will also be making S’mores and Coke floats. I will bring the movie, but it would be great if other people could bring the other ingredients, including:
Graham crackers
Hershey’s chocolate
Marshmallows
Coke
Ice cream
Plastic cups
Any other “good-bye to summer” treats you would like
Please let me know if you are able to bring any of these by Friday, September 9.
Tuesday, September 20, 7 to 9 P. M, Games on Tap (321 Weber St. North, Waterloo): Join us for a fun evening of board games. If you buy food when you are there, you will not have to pay an entrance fee, but if you do not order food, the entrance fee will be $2.50.If you buy food when you are there, you do not need to pay the entrance fee, but if you do not, the entrance fee is $2.50. Please RSVP as to whether you are coming by Friday, September 16 at noon so I can let Games on Tap know who is coming.
Please feel free to contact me with any concerns or questions. We also would LOVE to hear your ideas for future Coffee Club sessions so please send them my way. There are several ways you can contact me:
 (519) 500-7153 (Cell Phone)
E-mail: carmen.sutherland@wrfn.info
I’m excited to hear from you!
Carmen

Coffee Club Close-Up

Round 2:Rebekah Haynes 

1) Can you share with us a favourite memory (not of Coffee Club, just in general)?
I had a lot of fun when I was almost 12 when we went on an extended family camping trip. I got to meet family I'd never ever met and had a lot of fun swimming and going fishing. I even caught my first fish.

2) Is there a song you love right now? Why do you love it?
Who Am I by Casting Crowns because it demonstrates to me just how much God loves us. The honesty and raw emotion in this song are very powerful.
3) What is one thing you are proud of?
Being able to let go of my fears and try something I didn't think I'd ever do-gliding. I'm so grateful for the opportunity to do this, which was provided by the Freedom Gliders in Arthur. It's exhilarating and breathtaking.
4) What is something you are looking forward to?
Time with my family ie Thanksgiving/Christmas. We don't see each other very often and my nieces and nephews are growing up so fast. I wish my family was closer.

5) What is something you do to make yourself happy when you are sad?
Count my blessings-so many things to be grateful for.

6) If you could spend time with a famous person for a day, who would it be and why?
I honestly don't think famous ppl are any better then anyone else, we all have different abilities and skills as well as imperfections. I am not one to idolize someone else.
If I could pick someone I'd would have liked to have met Princess Diana. I think she was very caring and had the ability to not let fame/status go to her head. I feel that she was very real and down to earth and it's too bad her life ended on such a tragic note.
7) Can you try to describe Coffee Club in five words?
conversation, laughter, experiences, friendship, fun

Did You Know September is... 

International Primary Biliary Cholangitis Day - September 11 
National PKD (Polycystic Kidney Disease) Awareness Day - September 4th 
Muscular Dystrophy Awareness Month 
National Arthritis Awareness Month 
Childhood Cancer Awareness Month
Men's Cancer Health Awareness Month
Ovarian Cancer Awareness Month
Prostate Cancer Awarness Month
Blood Cancer Awareness Month
Global Mitochondrial Disease Awareness Week - September 19-23
Fetal Alcohol Spectrum Disorder (FASD) Awareness Day- September 9 - Please note that the FASDwaterlooregion.ca website has been refreshed!  It is a go to website for caregivers and professionals to learn more about FASD.   
World Suicide Prevention Day - September 10
World Alzheimer's Day - September 21
World Heart Day - September 29th

Upcoming Events in the
Community & Beyond

From time to time, the Waterloo Region Family Network (WRFN) is asked to distribute information on behalf of third parties.  WRFN provides general information to self-advocates and families of children with special needs.  The information provided in this newsletter is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider.  WRFN is not responsible for any information or services provided by third parties.  You are urged to use independent judgement when considering any resource. 

Employment & Income Support
As you may be aware, on June 22 Community Services submitted a report to Council suggesting a realignment of service categories for the Ontario Works Discretionary Benefits program (OWDB).  Council has approved to maintain service levels for 2016. However, Employment and Income Support is in the process of planning to stabilize the program for 2017 and beyond. The Region of Waterloo would like to work with community members proactively to plan for the proposed changes. They are seeking experience and expertise from the community, and will incorporate the input received into a report going to Regional Council in the fall about the proposed realignment. 
How to participate:  There will be two consultation sessions over a period of two weeks:
Session 1: Exploring Opportunities - Tuesday, September 6th, 9:00am – 12:00pm. 
150 Main Street, Room 170, Cambridge, N1R 6P9.  RSVP here.
Session 2: Finalizing Recommendations - Monday, September 12th, 1:00pm – 4:00pm 
99 Regina Street South, Room 508, Waterloo, N2G 4G6. RSVP here 
For all the details please click here.  

Future Planning – Providing Leadership That Lasts
Facilitation Wellington Dufferin is hosting their next series of community information events, scheduled for the evenings of Tuesday, September 13th in Guelph, and Wednesday, September 14th in Orangeville.
These events are free and open to anyone in the community who is interested in attending.  Please register by e-mailing JoannaGoode@facilitationwellingtondufferin.ca.
Please see the Future Planning Event Flyer.

Sexuality and Disability
The Who. The What. The How.
This is a FREE series that is open to adults 18+.  Topics include: relationships, online dating, sexual aids, sexual behaviour and safety. 
This is a three part series but you are not required to go to all of the sessions.  Please see the flyer for details and contact information.  

Safety for Independent Living
Safety for Independent Living.  A personal safety program for people with a developmental disability. Role play, repetition, activities and videos are used to engage participants in this fun learning opportunity. Participants will learn life skills that empower them to make safe, caring and respectful decisions in their everyday lives.
This program is for individuals 18+.  It will be held on Thursday evenings from 5:45-8:45pm on September 22nd, September 29th, October 6th and October 13th.  The cost is $55.
Christian Horizons Waterloo Community Participation Program,
Unit 3-4278 King St. E Kitchener.
For more information please see the flyer. 
Future sessions will be held at the following locations:
Aldaview Services (332 Hamilton Rd., New Hamburg) - Nov. 1-29th from 9:30-11am
KW Habilitation (99 Ottawa St. S. Kitchener) - Nov. 3-24th from 4:30-7:30pm
To register of for more information please contact Becky Verdun at 519-741-1121 ext. 2226 or b.verdun@dscwr.com

The A-Team Waterloo Region

The A-Team is primarily run by individuals with Aspergers Syndrome, for individuals with Asperger's Syndrome, with some assistance from Waterloo Region Family Network. The goal is to create a safe and welcoming environment to meet fellow adults with Aspergers Syndrome, discuss topics of interest, share experiences, and embrace our neurological diversity.  This program is open for adults 19+ who are either diagnosed or self-identify with Asperger's Syndrome and who are seeking support.  The program welcomes individuals who are able to function at a vocational level.
Meeting Dates: Sept. 22, Oct. 20, Nov. 17, Dec. 15th   
Time: 7:30pm
Location: KW Habilitation  
RSVP is required to ateam.waterlooregion@gmail.com 
For complete details please see the flyer.
A-Team also has a new website! It has information about the group including a group description, FAQ page, and participant code of conduct.  Check it out here.

Extend-A-Family is hiring!
Extend-A-Family Waterloo Region is hiring Direct Support People for an immediate need!  Do you feel passionate about inclusive community?  Want to support others' unique goals? or know someone who does?  Check us out for flexible part-time opportunities! visit.eafwr.on.ca/personalsupport/

Support Groups for Adults with ASD (19+) and Parents/Caregivers of Adults with ASD (19+)
Date: Monthly, second Thursday every month
Upcoming Dates: September 8th, October 13th.
Time: 6:00pm to 8:00pm
Location: Extend-A-Family, 91 Moore Avenue, Kitchener
               Parking and Entrance at back of building
Cost: Free

Support Group for Parents/Caregivers of Teens with ASD (ages 13-18)

Upcoming Dates: September 10th, September 24th
Time: 7:00pm to 9:00pm
Location:  Downtown Community Centre, 35B Weber Street, Kitchener, Main level cafe
               Parking in Pink area, passes will be issued
Cost: Free

Nanny Opportunity

Help is needed for before/after school, PD days, holidays and summer.  During the school year it would be approximately 20 hours a week.  Duties include diapering, feeding, dressing, light house keeping and meal preparation.  Location is in Kitchener close to Victoria street.  If you are interested please contact Marlene at medoornbo@hotmail.com.

D.A.R.E.

Dance Adventure Rhythm Experience offers an exciting weekly class filled with dance, movement, and music. D.A.R.E. is a class that offers active and social engagement for kids across developmental and physical abilities. The program runs throughout the school year and provides an optional year-end stage performance with the Dance Adventure community.
Classes begin September 12th, 2016.
For more information or to register email dare@danceadventure.ca

"Keeping Them Coming Back" - Effective Donor Stewardship Practices
By participating in this workshop, registrants will learn how stewardship connects donors with the mission and vision of their organizations they support. Registrants will also develop an understanding of how stewardship transforms a donor’s passive interest into passion for the cause. Registrants will see that stewarding relations with donors is a role that everyone within the organization can play.

Dates: Monday, Sept. 26th, 2016, 10:00 to 4:30pm OR

Tuesday, September 27th, 2016, 10:00 am to 4:30 pm
Presenter: Mike Paquet, Principal, People First Resource Development
For details please click here.

Extend-A-Family WR's 3rd Annual Ball Hockey Tournament
Come on out with your friends and family to enjoy a great day of fun at Extend-A-Family Waterloo Region’s Community Ball Hockey Tournament!
Saturday, September 24th from 10am-4pm!
The day will also include children’s activities, games, skills competitions, music.
For more details please see the website.

Pup Star - Sensory Friendly Screening
Cineplex Entertainment in partnership with Autism Speaks Canada is delighted to present Sensory Friendly Screenings. This program provides a sensory friendly environment for individuals with autism spectrum disorder or anyone for whom the environment is suitable and their families to view new release films in theatres across the country.

Movie: Pup Star
Date: Saturday, September 17th
Time: 10:30am
Cost: Free
Location: Galaxy Cinemas Waterloo (550 King St. North)

Tickets will be available the Tuesday prior to the screening date.

For more information on Sensory Friendly Screenings click here.

ArtShine Fall Art Program at KW Habilitation

Create fun art projects using various materials each week!  Explore painting, pastels, drawing and printmaking.

When: Wednesdays, Sept. 7 – Oct. 26th
Time: 4-5:30pm
Cost: $108.48
Location: KW Habilitation (99 Ottawa St. S)

Reserve a space before August 24th.  Space is limited.

Please see the ArtShine at KW Hab flyer for details on registration.

Team Breeze

Twisters Cheer Athletics is pleased to offer Team Breeze, a cheer program designed for special needs athletes.  The program is designed to teach children, teens and adults the fundamentals of cheer, tumbling and dance movements.  This is for individuals 6+.
When: Saturdays from 1-2pm, mid-September until the end of April
Open House Dates: Team Breeze is having two open house dates for people to come out and try cheer!  Come September 17th and/or September 24th. The details can be found here.  
Contact: info@twisterscheerathletics.com
See the Team Breeze flyer for more details.

 Focus Group Participants Needed
The Ministry of Community and Social Services is holding focus  groups with individuals and families that take part in ministry-funded services and supports. If you are an individual or family who receive/take part in developmental services and supports you are invited to participate in a focus group.
Please note the last focus group was cancelled. They are still recruiting for the new dates.  You can find information about the new dates and registration here.  If you are interested you must reply by September 2, 2016.

Active Souls Project – Health & Fitness Support for EveryAbility
Active Souls Project provides 1 on 1, partner and small group fitness training to those with special needs. The programs are designed to help persons with a broad range of exceptional needs enhance their self-esteem, self confidence and
independence to reach their greatest potential.
6 week Fitness Class for People of All Abilities - This program will run at The Family Centre starting October 5th.  You can find out more about this program here. 
Please call Sascha for more information about Active Souls Project at 519-500-2156 or email info@activesoulsproject.com
Visit our website at: www.activesoulsproject.com

Your Experiences When Switched to Generic ADHD Medications 
Over the past few years the Centre for ADHD Awareness, Canada (CADDAC) has been receiving anecdotal feedback from caregivers, adults with ADHD and physicians indicating a decrease in symptom control and an increase in side effects when switched to the generic version of Concerta. Since our nation-wide survey confirmed this anecdotal feedback CADDAC will be undertaking further advocacy work on this issue. 
If you have experienced any of these issues and are willing to discuss this with us, please contact us at juanita.beaudry@caddac.ca outlining these issues and we will arrange a time for a quick telephone chat. 

Do you have Passport funding?
For free help and advice on:

-What is available to you

-Where to find supports to purchase

-How to spend your funding

Contact the Becky Verdun, the Passport Community Developer for Waterloo Region,
at Developmental Services Resource Centre – 519-741-1121 ext. 2226,
or by email at b.verdun@dscwr.com. 

Planned Lifetime Networks - Annual Amble/Community Walk
Join Planned Lifetime Networks on their 11th annual Amble/Community Walk.  This is a family and  community event for everyone, so come walk or roll! Bring your children for various activities including crafts, music, fire truck, bubble; eat BBQ; reconnect with family and friends and our local community.

Date: Saturday, September 24th
Time: 10am-1pm
Place: The Family Centre, 65 Hanson Ave, Kitchener

To obtain more information email amble@plnwwo.ca 
or call 519-624-5195
PLN Amble/Community Walk 2016  

Speak Your Mind Speech and Language Services Presents...

The Think Tank - Junior Smarts - Social thinking focuses on helping children figure out how to think in social situations. The Junior Smarts program is an introductory program that follows the Social Thinking ® concepts created by Michelle Garcia Winner.
Who: Children ages 4-6 at the beginning stages of learning the Social Thinking concepts.

When: Sessions will run Thursdays for 9 weeks starting in September from 4pm until 5pm.
For more information please see the details.  

The Think Tank - Senior Smarts - The Senior Smarts program is for children with previous Social Thinking ® experience. The concepts explored are based on the Social Thinking concepts created by Michelle Garcia Winner.

Who: Children ages 6-9 with previous experience learning the Social Thinking concepts.  
When: Thursdays for 9 weeks starting in September from 5:15pm until 6:15pm.
Find more details here.

Nanny/Support Care Worker Opportunity 
 Help is needed to care for two children, 2 yrs old and 6 months old.   Both children have special needs.   Mom is currently at home with the children but is in need of a nanny/support worker who can assist in the home.  The hours are Monday - Friday 9 - 6, but can be flexible.  Responsibilities include:  assist in basic care for both children,  playtime for toddler, light house keeping, assisting mom with G-Tube feeding (training will be provided),  and assist during medical emergency situations. Salary negotiable.
Please contact Hilde at chan.hilde@gmail.com or 519-208-8689

Family Math Facilitator Training

The Ontario Early Years System of Waterloo Region is offering a
Family Math Facilitator Training at Our Place on Friday, September 9^th from 1-5pm.

Training Outcomes:

- Understand why family involvement is an essential component of a child’s
mathematical development

- Demonstrate ways to create and maintain a favorable learning climate for families

- Understand the structure of the 6 week Family Math Program

Visit the website for more information about the Family Math Canada program.

See the Family Math Facilitator Training Flyer for details about registration.

Class Actions Settlement

There was a lawsuit regarding 12 Ontario institutions for people with developmental disabilities.  The lawsuit is now over and there is money for people who were harmed while living at any of the 12 institutions during the noted time periods.
Please see the website for all the details and contact information.

“aspace”
"aspace" brings together high school students wanting to meet peers who also have Aspergers or High Functioning Autism. Outings and activities are chosen by participants, and every night is supported by trained university volunteers. 
The teens get together year-round, every Saturday night from 7-9pm.  Weeks will alternate with hanging out at the club and going out on the town! 
To register please see the following link:
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ADOS-2 Certification Training Session
Karisa Parkington and Roxane Itier are working together to develop an autism spectrum disorder (ASD) research initiative to focus on social functioning for adults with an ASD. To prepare for this initiative, Karisa Parkington is currently undergoing training certification for the Autism Diagnostic Observation Schedule,   Second Edition (ADOS-2). The ADOS-2 is a play-based clinical assessment tool for ASD. To proceed with the certification process, we are looking for a few individuals already diagnosed with an ASD to participate in an ADOS-2 assessment session for training purposes.
Who can participate?
Children or adolescents aged 8 – 17 years with a previously confirmed ASD diagnosis and fluent verbal speech are invited to participate at this time.
Please see the parent information letter for all of the details. 

 Live & Learn Centre
Live & Learn is a new business in Guelph that focuses on building community and fostering independence for adults with developmental disabilities. The programs provide unique learning experiences that facilitate growth in independence, self-esteem,
life skills and peer-interaction.
You can learn more about Live & Learn here or on their website.

 Young Carers Peer Program
If you are you a Young Carer between the age of 12 to 17 join us for an evening opportunity to connect with other young carers that share similar experiences.
No RVSP is required, just drop in! Young Carers are children, youth, and young adults who experience an alteration in our family role, as a result of another family member's exceptional need or unique family situation.  Click here to see the flyer.
To join text Julie @ 519‐501‐9736 or email Julie.
To learn more about young carers visit www.youngcarersproject.ca

Sensory Sundays at SkyZone

On the last Sunday of every month, SkyZone will be offering a “Sensory Sunday” jumping time for jumpers with special needs. 
The music will be turned down and they will minimize distractions. 
8-10am, $15 per jumper, with one free “chaperone” for support.  
See their webpage here.   

Sleep and neurodevelopmental disorders: Treatment barriers and facilitators

Did you know that between 50-­95% of children with neurodevelopmental disorders (NDD) have behavioural sleep problems? Common NDDs include Attention­‐Deficit/Hyperactivity Disorder (ADHD), Fetal Alcohol Spectrum Disorder (FASD), and Cerebral Palsy (CP). 
A study is being conducted through Dalhousie University to help researchers learn how to increase families' access to effective treatments for sleep problems in kids with neurodevelopmental disorders.  The study is looking to hear from parents that have children between the age of 4-12 and health care professionals.
To learn more about these opportunities please see the summary for parents or the summary for health care professionals.  

 Leaps & Bounds ASD Services

Leaps & Bounds are pioneers in providing IBI and ABA programming to both private and government funded clients.

As they expand into the region, they will begin with in-home and in-school programming with the goal of opening up a centre in the area once they have a client base.
You can find more information here or on their website. 

The Wellington-Waterloo Chapter of Tourette Canada 
Tourette Syndrome occurs in one person in every 100, so it's far more prevalent than people realize.  I'm certain that there are other families in Waterloo Region that are floundering for help and support for their children with TS, and not knowing where to turn.  I would LOVE to see them connect with us.
Jennie Agnew Wellington-Waterloo Chapter, Tourette Canada
www.tourette.ca Tel 1-800-361-3120 ext 61 wellington-waterloo@tourette.ca

Your Chance to Make Your Voice Heard in the Ontario Legislature Regarding Funding for Family-Created Housing 

Your loved one deserves a choice in how, where and with whom they want to live. Families should be allowed to create a housing model that emerges from the person, not the person fitting the model, thus getting the life they want, as we are all distinct. Our models may all be different. However, they do share a common thread, which is the lack of long-term sustainable funding in order to make these dreams a reality for our loved one. Home of Their Own, along with Catherine Fife – MPP Kitchener – Waterloo (NDP Finance Critic), have worked together to draft a petition to address this crisis in the Ontario Legislature.  

Click here to find out more information regarding the petition process
as well as the link to the petition.

FASD Caregiver Consultations
Families and service providers can have a chance to sit 1:1 with our FASD Project Coordinators to ask questions and learn more about:

- Diagnosis
- Financial Supports
- Parenting Strategies
- Recreational Opportunities
- Ideas for School
- Community Resources 

When: Second and Fourth Tuesday of the month. No appointment necessary. Just drop in.
Where:  99 Regina Waterloo Rm 208 (Waterloo Region Public Health) 
Find the flyer here.

Sleep and Your New Baby
Get to know more about your baby's sleep cycle and how to respond.  A free session for parents of newborns from birth to 12 weeks of age.  You may bring a family member or friend for support.
Offered at your Ontario Early Years Centre in Kitchener, Waterloo and Cambridge.
Reserve your spot today at www.earlyyearsinfo.ca/sleep-sessions

Our Place Family Resource and Early Years Centre 
has shared their September 2016 Program Calendar.  Check out all the great programs they have running this summer around the Region. 
Preparing for Parenthood - Our Place will also be offering their Preparing for Parenthood program in Breslau this fall.  This is a FREE program that offers information about having a healthy pregnancy and becoming a parent. See the Preparing For Parenthood flyer for all of the details.

Transportation For Developmentally Challenged
Currently GRT offers transportation to only individuals who are physically challenged, or, someone who has a broken leg.  A commuter bus was established, however only individuals with developmental disabilities can access it if they attend one of only two programs they service.  If you, like me, need transportation for your child's community participation we are left with no options as our children do not qualify for Mobility Plus or Kiwanis.  GRT will be holding meetings this fall open to the public for consultation to determine the needs of the community.  If you are interested in joining a parent group who will attend these meetings to have our children's needs addressed please contact Deb at deb.pfeiffer@rogers.com   

 Are you a Caregiver or Professional with Questions about
Fetal Alcohol Spectrum Disorders?