Here is the response that I received from Government today.  Please refer to the Autism Action Plan document for more information.

How does this affect you and what do you think?

Today, Minister Currie held a press conference to release the HRA report that was completed last year. This report was created by a committee which included Government staff and two parent representatives from the Autism Society of PEI. These two parents were not allowed to share what was being discussed at the committee meetings, nor were they given a copy of the actual report until November 2009, months after it had been released to Government in September 2009 by HRA. How is this a fair and transparent process?

Here is today’s press release by the PEI Government:

Province Taking Action on Recommendations from Autism Report

CHARLOTTETOWN, PEI — Recommendations outlined in the new Autism Action Plan will guide the direction for the provincial Autism Strategy, says Education and Early Childhood Development Minister Doug Currie.

“Continuing to improve services to families and individuals living with an Autism Spectrum Disorder is a priority,” said Mr. Currie. “Prince Edward Island already has one of the best ratios in Canada of highly trained, certified professionals working with autistic children and their families. We know that services have come a long way, but there is still more to do.”

The Department of Education and Early Childhood Development partnered with the Autism Society of PEI and other provincial government departments to develop recommendations aimed at strengthening services for children and families coping with an Autism Spectrum Disorder (ASD).

The Autism Action Plan includes 37 recommendations. The department has already made significant progress by implementing new initiatives, including:

• Development of a new Intensive Kindergarten Support model to ensure children can continue to receive intensive support in their first school year.

• Increasing service capacity by hiring the Preschool Autism Co-ordinator and three full-time Preschool Autism Specialists, which is helping to decrease wait times.

• Hiring two new Autism Consultants, who will begin training this fall, to build capacity for supporting students at the Eastern and Western School Boards.

• Ensuring that children receiving Intensive Behavioural Intervention (IBI) services are now assessed at entry and exit from the program to help evaluate the effectiveness of the service.

The Department of Education and Early Childhood Development is taking immediate action on a number of additional recommendations outlined in the Autism Action Plan. Some of those actions include the creation of a part-time navigator position to help families understand the system and provide support, as well as enhancing the wage subsidy for home-based IBI tutors to help families subsidize wages while the department develops a new model for service delivery.

“A lot of time and effort went into the development of this report, which gives a roadmap to guide future service improvements. Today’s announced actions are an important first step. We’re looking forward to working with government to develop the necessary further steps required to effectively support Islanders living with Autism,” said Jeff Himelman, President of the Autism Society of Prince Edward Island.

“I am committed to developing an integrated, streamlined approach to the way we deliver autism services and programs in this province,” said Mr. Currie. “I would like to thank the members of the Autism Action Group for the work that went into this report. Your dedication to helping children with ASD is admirable and appreciated.”

Over the last year, the department has significantly increased its capacity to serve young children with autism in an IBI model, said the minister. To accommodate this growth and ensure quality and consistency of services going forward, a Preschool Autism Services handbook has been developed and will be available to the public in the coming weeks.

The Prince Edward Island Autism Action Plan: Another Piece of the Puzzle is available at Island Information Service or online at www.gov.pe.ca/eecd.

The HRA report “Recommendations Toward A Prince Edward Island Autism Action Plan: Another Piece of the Puzzle” can be found – Here

I recommend all families read this report and contact the Department of Education and Early Childhood Development if you have questions.

Facebook’s mission is to give people the power to share and make the world more open and connected. Sounds wonderful. Facebook provides a medium for families affected by autism to connect with each other on Prince Edward Island and abroad. With so many demands on our time, it gives us a chance to network with other families in the comfort of our own home or when our children give us a moment to spare. We have created groups, fan pages and long term friends.

I use Facebook as a way to connect with my family, other parents, friends as well as create discussion and awareness about things important to me. What I post is deliberate and I am aware that it could be read by anyone.

Are you aware of your privacy settings? If not you should visit here. Are your friends really your friends? Did you know that someone could (and has) copied and pasted a facebook status and emailed it to someone? Unlike The Guardian and CBC, the comments we make on Facebook are not anonymous.  People can share their opinions or comments and hide behind a username on these other sites. We are accountable for what we post.

The reason why I am writing this is to caution families that the Government is watching. Actually everyone is watching. It is a public forum. You might have your privacy settings restricted for your actual profile, but if comment on a public group or fan page then the information is there for everyone to see. Some autism families have received phone calls from the Department of Education and Early Childhood Education about their comments and/or status updates. Families should not feel threatened or guilty about reaching out to ask for help or information on Facebook. Our privacy is threatened.

Families affected by autism on Prince Edward Island have been waiting a long time for improved services. Parents will vent with other parents on Facebook. They want to be heard and they are looking for change.  I have been waiting for 4 years for change. There is no denying that there are problems with autism services on Prince Edward Island. Some parents are frustrated, angry, tired of waiting, unhappy, at their wits end, cross, bitter, hateful, outraged, and resentful because of the treatment they are receiving or not receiving.  Who can deny that the first 5 years of a child’s life is the most critical in human development? Instead of Government calling to criticize Facebook comments or status updates, maybe they could ask the family – “How can we meet the needs of your family?”.

I leave you with 3 pieces of advice.

1. Be aware of your privacy settings. Watch this video if you want to change them.
2. Think before you post. (Don’t drink and Facebook!)
3. Ask yourself, are your friends really your friends? If not, maybe you need to clean up your friend list or restrict the information that they can see.

Safe Facebooking!

Friday, April 23 – Paula Kluth

Author of “Just Give Him The Whale!” 20 Ways to Use Fascinations, Areas of Expertise, and Strengths to Support Students with Autism
“You’re Going to Love This Kid”: Teaching & Supporting Children on the Spectrum

This interactive presentation features group activities, real-world stories, and tools you can use immediately. Participants will learn practical ways of supporting those with autism spectrum labels & other disabilities in schools, at home, and in communities. Topics addressed include defining (and redefining) autism, listening to the voices of those with autism, creating more active and responsive lessons, and providing opportunities for communication and social skill development. Another special focus of the day will be how to build on an individual’s strengths, special interests, and abilities.

Dr. Paula Kluth is a consultant, teacher, author, advocate, and independent scholar who works with teachers and families to provide inclusive opportunities for students with disabilities and to create more responsive and engaging schooling experiences for all learners. Her research and professional interests include differentiating instruction, and supporting students with autism and significant disabilities in inclusive classrooms.

Paula is a former special educator who has served as a classroom teacher, consulting teacher, and inclusion facilitator. She works with teachers in K-12 schools, pre-schools, and early intervention programs. She also regularly works with family organizations and disability-rights and advocacy groups.

She is the author of “You’re Going to Love This Kid”: Teaching Students with Autism in the Inclusive Classroom; the lead editor of Access to Academics: Critical Approaches to Inclusive Curriculum, Instruction, and Policy, and the co-author of “Just Give Him The Whale!” 20 Ways to Use Fascinations, Areas of Expertise, and Strengths to Support Students with Autism and “A Land We Can Share”: Teaching Literacy to Students with Autism and these two upcoming texts: Joyful Learning: Active and Collaborative Structures for the Inclusive Classroom and You’re Welcome: 30 Innovative Ideas for Inclusive Schools.

Saturday, April 24 – Paula Aquilla

Co-author of “Building Bridges Through Sensory Integration”
The Role of Sensory Processing in Learning, Behaviour and Activities of Daily Life

This course will provide participants with basic neurology to understand and appreciate the process of making sense of sensory information. Each sense will be discussed from the receptors to the central nervous system. Understanding the neurology behind sensory processing can support understanding of this process that we do every moment of every day.

Participants will learn how to identify the behavioural and autonomic nervous system signs of a nervous system in a regulated and deregulated state.

Sensory diets provide the right type and right amount of intensity and duration of sensory input to help maintain the nervous system in a calm, alert state. In the calm alert state, a person can function at their best. This course will outline how to create an environment, approach, and specific activities to help maintain the nervous system in a calm, alert state. We will learn how to create sensory diets and how to integrate them into a typical day. Information gathering techniques and assessments will be discussed.

Creative strategies to support success at school and at home will be shared. Participants will learn tips that they can plug into their day right away! Case studies will be discussed to illustrate these strategies.

Paula is the mother of two teenagers and lives with her family in Toronto, Ontario. She is a graduate of the University of Toronto and has been practicing occupational therapy in community, clinic, school and home based settings for 22 years. Paula is a co-author of the book “Building Bridges Through Sensory Integration” and has contributed to several other publications. She teaches throughout North America. She is a thesis writer in the Canadian College of Osteopathy and hopes to complete her formal osteopathic studies in 2009. Paula brings warmth and enthusiasm in her work with children and their families.

Tentative Daily Schedule

Friday, April 23

Saturday, April 24

General Information

Conference Location Information

The conference will be held at:

The Lord Nelson Hotel & Suites
1515 South Park Street, Halifax, Nova Scotia
Phone: 902-423-5130 or 1-800-565-2020

Rates (taxes not included)
Be sure you mention the Autism Awareness Conference to receive the special rate.
Traditional Room Single/Double Occupancy: $129.00

Parking
Parking for guests is $20.00 per night.

Dress Code
Dress is business casual. Delegates are reminded that the room may be chilly at times and are encouraged to wear a sweater.

Meals, Refreshment Breaks
Delegates are on their own for lunch. There are several eating establishments within walking distance. Refreshment breaks will be served in the morning and afternoon.

Contact Autism Awareness Centre Inc.

Phone: (780) 474-8355 or Toll Free: 1-866-724-2224 Email: vharris (at) shaw.ca

Charlottetown, April 8, 2010 – An upcoming free public workshop will focus on ways to use recreational activities to improve the quality of life for individuals with disabilities.

The Autism Society of PEI is partnering with the Department of Education and Early Childhood Development, the UPEI Psychology Department and the Psychological Association of Prince Edward to present a free public workshop featuring Dr. Michael Cameron, Chair of the Behaviour Analysis Department at Simmons College in Boston, Massachusetts. Dr. Cameron is a leading figure in the field of Autism research.

“We’re very pleased to have someone of Dr. Cameron’s stature leading this workshop,” said Jeff Himelman, President of the Autism Society of PEI. “Increased recreational activities bring many positive benefits for physical and mental well-being and this is especially true for individuals with disabilities. Research shows that acquiring more recreational skills for individuals with disabilities can also lead to extra benefits in the form of reduced barriers to social interaction amongst peers. We’re looking forward to Dr. Cameron sharing his expertise in this area and outline strategies which can be of benefit for families and professionals on Prince Edward Island working towards this goal.”

The workshop will be of interest to individuals and families living with disabilities along with educators, specialists and support staff who work in the field of disabilities as well as students considering careers in the field. The workshop will take place on Saturday, April 10^th from 9 A.M. to 4 P.M. at the University of Prince Edward Island (KCI Building, Lecture Hall 104). The workshop is open to the public and is being offered free of charge although donations to the Autism Society of Prince Edward Island will be generously accepted.

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For More Information Contact:

Nathalie Walsh
Executive Director, Autism Society of PEI
902.566.4844

Additional Information: For those of you not familiar with the UPEI property. It is recommended that you enter the campus from the Belvedere Avenue entrance. Park in the parking lot closer to the main buildings (the one without a gate). The KC Irving building is the first building on your right as you walk up the pathway. You will see the new residence to your left. And if all else fails, here is a link to a map of UPEI. Workshop building is #17 and you can park in parking lot “B”.

As a client, this letter left me with a lot of unanswered questions. As soon as the Government is ready and willing to share the answers to these questions, I will share them with you.

Is this a part of the PEI Autism Strategy we are waiting for? Who would know. We can only do what we know how to do to the best of our ability..which is Wait.

Once the Autism funding is removed, will the Disability Support Program return to income testing their clients? It was because of the Autism funding that the Disability Support Program stopped income testing families after a Human Rights ruling back in 2007.

I am proud that I have been capable of advocating not only for my children, but children across the Island for the past 4 years. Very few things have changed in the past few years in regards to autism services, other than a change in Government. It is also extremely disappointing to state that we are still waiting for a promised Provincial Autism Strategy.

I will try to write and update this blog as events and issues come to light in regards to Autism on Prince Edward Island. You can also visit the Autism Society’s Website or find visit them on Facebook.

From my family to yours, I wish you all the best in 2010.

Dear Parent/Guardian:

We are pleased to announce that the two new additions to the Preschool Autism Service have arrived in PEI and started work. Our new Preschool Autism Coordinator, Courtney Patterson, will be visiting all the children, families and early childhood centres in the service over the next few weeks. Visits are being scheduled with the Preschool Autism Specialists, as she is eager to meet all the children.

We are also welcoming Chris Schwint to our team, as a Preschool Autism Specialist. Chris will aslo be doing some visits to observe other members of the Preschool Autism Team, as he gets to know the Island system and prepares to take children onto his caseload.

Courtney and Christ are loacted in the Aubin Arsenault Building, 3 Brighton Road. 902-368-6513.

Two “Meet and Great” events have been planned so that parents in our service or on our wait list can meet the new Coordinator and the growing Preschool Autism Team. We will also take this time to share some recent highlights in the Preschool Autism Service. The dates and times are as follows:

Charlottetown
Thursday, January 28, 2010
(Storm date: Monday, February 1, 2010)
6:30pm-8:00pm
Aubin Arsenault Building, Room 101, 3 Brighton Road

Summerside
Tuesday, February 2, 2010
(Storm date: Thursday, February 4, 2010)
6:30pm-8:00pm
Holman Building, Water Street (next to the Scotia Bank) please use rear entrance.

Those interested in attending are asked to please RSVP to (902) 368-5967 or cmferguson@gov.pe.ca . Also, please note that cancellation of either event will be advertised through Storm Watch on your local radio station.

It continues to shock and sadden me how many families do not know what supports are available to their family through the Disability Support Program (DSP) to help with the additional financial needs associated by raising a child affected by Autism.  This post is meant to help you become aware of the resources available to your family. Please understand that the needs of each family are unique and all families may only need some of the supports (unmet needs) available to them through the DSP program. The key is knowing what supports ARE available so you can tailor the program to meet the needs of YOUR family.

The disability support program is a financial support system. They do not have the capacity (from my personal experience) to actually support families affected by a disability outside of this financial bubble.  The name of the program is misleading isn’t it?

Families are just looking for help when they contact the DSP program for the first time. They do not know what is available and from recent first hand reports from parents, the DSP case workers are still beating around the bush when it comes to full disclosure of what is available. Wouldn’t it be great if at the initial meeting a family has with their Disability Support Case Worker they are presented with a copy of the Disability Support Program Policies (or simplified guide) and walked through the individual supports that are available to the family to help alleviate the stress of navigating through the confusing system?

Here is my attempt to help:

Intensive Behavioural Intervention (IBI) for Preschoolers
Available to: Preschool Children with a confirmed diagnosis of Autism.
Available when: Once they are enrolled in the Government Preschool Autism Program and confirmation is provided by the Preschool Autism Specialist assigned to the child’s case.
Max $$ per week: Funding is provided for 20 hours per week at a rate of $10 per hour (which has not increased over the past 11 years). $200 per week plus employers contributions are available. Note that vacation pay and workers compensation is not provided by the DSP program, only CPP and EI is funded. Therefore the extra comes out of the pockets of families.

Good to know: Preschool Autism therapy can take place in a home environment or a child care environment depending on the needs of the family/child. There are different funding arrangements that are available to families which include: Family hiring the tutor and supervising the work in their own home. In some cases therapy takes place in a child care setting. When this happens, families need to speak with the owner and decide who is the employer of the staff person and how he/she will be paid. I have seen both cases where the parent is the employer and the tutor is present at the child care center to provide therapy with the child and there are cases where the DSP funding is turned over directly to the child care centre and they are relieved of employer responsibilities. There are pros and cons to each option and it varies from family to family.

Intensive Behavioural Intervention (IBI) for School Age children
Available to: School Age Children with a confirmed diagnosis of Autism.
Available when: September of the year they enter Grade One until they graduate high school.
Max $$ per week: This varies during the calender year. During the time a child is attending school, funding is provided for 10 hours per week at a rate of $10 per hour (which has not increased over the past 11 years). $100 per week plus employers contributions are available. Note that vacation pay and workers compensation is not provided by the DSP program, only CPP and EI is funded. Therefore the extra comes out of the pockets of families. But when school age children are on summer break and school breaks such as xmas and march break, they have access to up to 20 hours per week, with employers contributions available on top of the wage amount.

Interesting to Note: Programming and training for the tutors who work with school age children is non-existent unless the parents are capable of training and/or providing programming for their children or opt to hire a private autism consultant. The Autism Consultants at the school board (from my experience) only provide support for children with autism within the school day, no programming for home or community environments.

My biggest pet peeve with this current system is that school age children affected by autism have access to 20 hours of funded therapy per week during the school breaks with no programming support or training for staff. While preschool children on the waitlist for treatment are denied access to the 20 hours of funding to begin early intervention until there is space for them in the Government Preschool Autism Program. Where is the accountability? Doesn’t this sound like discrimination based on age?

IBI Materials
Available to: Preschool Children with a confirmed diagnosis of Autism.
Available when: Once they are enrolled in the Government Preschool Autism Program. Funding ends when a child enters Grade one.
Max $$ per month: $300 is available during the first month for start up costs such as kid sized table chairs, organizing/storage materials, binders, and direct program materials. Every month after, families have access to $100 to purchase new materials for programming.

Interesting to note: Funding for the Intensive Behavioural Intervention for preschool and school age children as well as material costs actually comes from the budget of the Department of Education and Early Childhood Development and funneled through the DSP program for distribution. I understand that Government is working on taking this out of the DSP program, but are still working on how best to distribute these funds to families.

Diapers (Incontinent Supplies)
Available to: Any special needs child over the age of 3 that is eligible for the DSP program.
Available when: The month the child turns 3 until they become toilet trained.
Max $$ per month: I am not aware of a maximum dollar amount on this item. You get what you ask for in my experience. You need to determine approximately how many diapers your child will go through in a month and come up with how many packages of diapers are needed. This number will become your monthly total unless you contact your DSP case worker to ask for an increase or reduction.

Good to know: The funding for diapers can be included in the monthly cheque or you can have an account set up at a local store which will invoice the DSP program for cost of the diapers, up to the prenegotiated monthly funding amount on your case plan.

Respite
Available to: A family with a special needs child that is eligible for the DSP program.
Available when: As soon as a child qualifies with an eligible disability into the DSP program.
Max $$ per month: $430

Good to know: The function of respite is to relieve the primary caregiver for a specific period of time while facilitating a positive experience for the individual with a disability. Respite is not funding for daily child care and the needs vary from family to family. A parent who stays at home with their children may need a period of respite during the day, but a working parent may need their respite in the evenings or the weekends. If you refer to Appendix C on page 43 of the DSP Policy it will show you the breakdown for the respite funding that is available. The breakdown is as follows: There is a total of 4 days X $70 day = $280 per month. In addition there is a maximum of an additional 15 hours X $10 per hour = $150 per month. There are no additional funds for employers contributions for respite if the person hired is your employee and not contracted. A mother recently told me she felt bad for asking for a small amount of respite funding. Parents: you need to take time for yourself so you can recharge your energy to take care of your child(ren).

Support Coordination
Available to: A family with a special needs child that is eligible for the DSP program.
Available when: As soon as a child qualifies with an eligible disability into the DSP program.
Max $$ per month: $200 (Approx 20 hours X $10 per hour)

Good to know: Many people are not aware of the funding for support coordination. It can be referenced under the heading “Specialized Supports – other supports” on Appendix C on page 43 of the DSP policy. A support coordinator can help the family coordinate their disability services, such as set up scheduling for IBI therapy or respite time, prepare materials for families in the preschool IBI program, assist in the paperwork around being an employer or keeping track of receipts and/or logs for the DSP program. Again, the needs of a support coordinator can be tailored to the needs of the individual family. There are no additional funds for employers contributions.

Home Modifications (Fence, etc)
Available to: A family with a special needs child that is eligible for the DSP program.
Available when: As soon as a child qualifies with an eligible disability into the DSP program.
Max $$ per lifetime: $2000

Good to know: There is a lifetime maximum of $2000. This financial support has benefited families affected by autism by providing such supports as fencing if the child is a flight risk or in other cases it has helped families with renovations for a therapy room. Again this support varies depending on the needs of the child/family.

In conclusion
Families new to the program will be happy to know that the monthly funding total is mailed to families the first of every month in advance.

If I can offer one piece of advice when dealing with the Disability Support Program it would be this. Always take a friend (or mother, spouse or community member) with you to meet with them. They can support you if they have been through it before or they can calm you down if the meeting is emotional.

As I enter school age supports with Brandon, I will be asking new questions for the Disability Support Program. At which point I will follow up with another post for an update.

Raising a child with special needs should be celebrated and nurtured. I think I am special to be blessed with these angels that teach me so much about me and life.