Ok, please don’t be offended by the title of the post. I do not think you are a dummie or an idiot. In this post I will explain some of the financial supports available through the Disability Support Program in an easy to understand way with some “good to know” facts. I have been a client of the PEI Disability Support Program since 2006 and have learned about the following financial supports through my personal research from asking the right questions and reading the DSP policy. Some of these supports are only for children with a diagnosis of autism, but many of them are for any special needs child who is eligible for DSP support.

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.

The Preschool Autism Services offices are no longer at the Sherwood Business Centre. They can be found at the Aubin Arsenault Building, 3 Brighton Road, Charlottetown.

The phone numbers will remain the same.

Please be advised of the following event taking place this week:

We are proud to announce the family-led “Autism Awareness Rally” taking place on November 19, 2009 between 1pm-2pm at Province House, Charlottetown. The public is then welcomed to watch the proceedings of the House beginning at 2pm.

In addition to this public event we have an online petition that can be found at http://www.ipetitions.com/petition/autismpei/ . Our Facebook Page “Faces of Autism 2009” has in excess of 700 friends currently and continues to grow.

You can find our campaign website at: www.facesofautism.wordpress.com

To learn more about this event or how you can help, please contact Tammy McQuaid at (902) 658-2869 or email us at facesofautism2009@gmail.com .

Sincerely,

Tammy McQuaid

Faces of Autism: Day of Action Planning Committee

Even though the weather was threatening snow, Krista MacGillivray and I made it to Halifax safe and sound on Friday evening. It was a whirlwind trip but we obtained a lot of interesting research information that I will be sharing over the next two weeks. I plan to write a summary for each speaker with links so readers can have access to the research that we did. I look forward to hearing your comments!

Another parent and I are heading to the “Advances in the Science and Treatment of Autism” this weekend at Dalhousie University. It is being organized in partnership with the IWK. Brochure can be found here. I will report back with updated information after the conference!

Here is the schedule and speaker bios:

Friday November 6, 2009: Pier 21, 1055 Marginal Rd
5:30-6:30pm: Reception
6:30-7:30pm: Speaker: Dr. Patricia Rodier, University of Rochester, Rochester N.Y.
7:30pm: Dinner

Saturday, November 7, 2009: Dalhousie University
8:00-8:30am Check-In/Reception: McCain Building 6135 University Ave
8:30-9:00: Welcome Jennifer Overton (A Parent’s Perspective)
9:00-9:30: Susan Bryson, Dalhousie U
9:30-10:30: Marcel Just, Carnegie Mellon University, Pittsburgh, Pennsylvania
10:30-11:00: Nutrition Break: McCain Bldg
11:00-12:00: Mathew Goodwin, Massachusetts Institute of Technology, Cambridge, Massachusetts
12:00-1:00: Lunch: McInnes Room , S.U.B. 6136 University Ave
1:00-2:00: Peter Szatmari, McMaster University, Hamilton ON
2:00-3:00: Lonnie Zwaigenbaum, University of Alberta, Edmonton AB
3:00-3:30: Nutrition Break: McCain Bldg
3:30-4:30: Patricia Mirenda, University of British Columbia, Vancouver BC
4:30-4:45: Richard Goldbloom, Dalhousie U

Dr. Patricia Rodier, University of Rochester A leading researcher in the neurobiological origins of Autism, Dr. Rodier shares her research on prenatal environmental exposures.
Jennifer Overton, Actor, Teacher, Author and mother of a teenage son diagnosed with Autism shares a parent’s perspective on raising a child with autism.
Dr. Susan Bryson, Dalhousie University Craig Chair in Autism Research, Dr. Bryson gives an overview of current research on Autism.
Dr. Marcel Just, Carnegie Mellon University, Director of the Centre for Cognitive Brain Imaging , Dr. Just discusses cutting edge imaging research thathas advanced understanding of brain function in autism.
Dr. Matthew Goodwin, Massachusetts Institute of Tecnology describes advances in the physiological basis of arousal in autism, with reference to the role of autonomic nervous system regulation.
Dr. Peter Szatmari, McMaster University Chedoke Health Chair in Child Psychiatry, Dr. Szatmari shares advances in the genetics and epigenetics of autism.
Dr. Lonnie Zwaigenbaum, University of Alberta Co-Director of the Autism Research Centre Glenrose Rehabilitation, Dr. Zwaigenbau, discusses the issue of increasing prevalence of autism and possible links to environmental exposures.
Dr. Pat Mirenda, University of B.C. An expert in Special Education and Communication Disorders, including augmentative and alternative
communication systems, Dr. Mirenda discusses the treatment of autism.
Dr. Richard Goldbloom, Dalhousie University Renowned pediatrician and former Chancellor of Dalhousie University, Dr. Goldbloom gives closing remarks.

 

This letter to the editor was in today’s The Guardian. I hope the public will understand the challenges that families face on Prince Edward Island.

LETTERS TO THE EDITOR
Editor:

There are more kids being diagnosed with autism and it should become a priority.

Our three-year-old daughter was diagnosed with autism in November 2008. We were put on a waiting list for her to start intensive behaviour intervention (IBI) therapy in September 2009. With autism, the younger they are to start therapy, the better. We have spent the last year working with our daughter in all the areas that she has needed help in but the work was worth it as she has made incredible progress.

We looked forward to the help from the pre-school autism team when she started her IBI. When September 2009 came, we were contacted and a tutor was hired and myself and the tutor went to courses that were provided for the therapy. We had appointments booked to start the paperwork but something unfortunate happened and the pre-school autism staff member became ill. We received a call around the end of September telling us that she was still ill and would be out another month (which is now the end of October). I questioned about the return and if she was delayed longer, what would be done. I was told that someone else would be out to observe my daughter. If the team member doesn’t return, someone will have to be hired.

This is outrageous that the wait is so long. Our daughter has been waiting a year and now may have to wait longer. This is the time that the therapy should be happening.

I always wondered why people went off-Island for help and I can see why now. This is a hard enough time for families, to have a child with a condition like this and you can’t do anything about it. The P.E.I. government really has to take a look at this.

Darlene Ellis,

Charlottetown

I am wondering if anyone has had a similar experience with receiving call backs from Government, whether it be a bureaucrat or their elected MLA.  For example, I left a voice message for Ms. Sarah Henry at the end of the day on Friday, September 4th, 2009.  I stated that I would like to speak with her regarding the IBI tutor list that Government has begun to compile.

Almost six weeks have since passed and I am still waiting to speak to Government about the IBI tutor list. What are your thoughts on a reasonable time frame for a call back? 2-3 days? That would be appropriate. Or even a follow up email to ask for my questions so they can be addressed.

Two weeks after my initial phone call, all the Preschool IBI Service families received a letter regarding a negative situation that took place with the Passport to Employment autism trainees. I appreciate the letter of communication regarding this unfortunate incident. Perhaps it was assumed that the questions that I did have were answered in the letter. If this is the case, it has been assumed wrong.

Would I have gotten a (quicker) response if I had not stated why I was calling? I hope other parents do not have to wait a long period of time to get their questions answered.

Very interested to hear how long others have waited….

Posted in Government ]]> http://preschoolautism.wordpress.com/2009/10/14/government-phone-ettiquette/feed/ 0 aennis http://preschoolautism.wordpress.com/2009/10/13/a-premiers-broken-promise/ http://preschoolautism.wordpress.com/2009/10/13/a-premiers-broken-promise/#comments Tue, 13 Oct 2009 22:09:51 +0000 aennis http://preschoolautism.wordpress.com/?p=596 ]]>

Eighteen months have passed since I was given hope that the PEI Government was going to create an Autism Strategy for it’s residents. In this May 2008 post, I questioned the reality of an internal autism strategy. To date, the PEI Government has not shared this internal strategy with parents or the Autism Society of PEI.

April 3, 2008

Hi April,

Thanks for your e-mail. I had the chance to take a quick look at your
video. You did an excellent job. Your message was presented in a very
professional, thought-provoking and engaging manner.

I have forwarded your e-mail to both Minister Currie, Department of
Social Services and Seniors; and Minister Greenan, Department of

Education, for information. Both departments are working
collaboratively to update and further develop an Autism Strategy for PEI.

I appreciate your taking the time to share your personal experiences
and comments regarding care and support, respect, and education for
special needs children.

Sincerely,

Robert Ghiz
Premier

Parents’ patience is wearing thin, frustrations and stress is increasing, the prevalence of autism has risen to 1 in 91 children.  When will Government recognize the crisis at hand? When will our children be important enough? Mr. Premier when are families going to be supported with a real strategy? What is a reasonable amount of time to wait for this strategy?

The reality is that the PEI Government began a closed consultation process in the fall of 2008. This statement was made by one Department of Education staff  “The Department of Education and Early Childhood Development, with the Departments of Health and Social Services & Seniors and the Autism Society have been working with HRA to review existing policies and programs, and provide recommendations for action. It may be a period of time before recommendations come from this process, but we can be optimistic the process is taking place.”

This review has been completed for some time, and the report of recommendations has been forwarded to Government, but all members of the committee have not even seen the final report. There was no public consultation process for parents and staff to share their voice.

It is very disappointing to be writing this post a year and a half later with no changes to improve supports for families affected by autism on Prince Edward Island.

“Researchers at the Center for Autism and Related Disorders, Inc. (CARD) found that increasing treatment hours within an early intensive behavioral intervention program resulted in greater efficiency in new skill acquisition. This effect was the strongest in younger children within their study.

The study also showed no point of diminishing returns as hours were increased. Meaning that 20 hours per week was better than 10, 30 hours per week was better than 20, and 40 was better than 30. The degree of improvement did not decrease as treatment intensity approached 40 hours per week.”

More on this study here.

The United States Government confirmed today that autism is affecting 1 in 100 children now. Statistics show that boys are affected at a higher rate, and it is estimated that 1 in 58 boys are affected by autism.

So with these new numbers, is the Canadian or Prince Edward Island Government going to do more for families affected by Autism? What does the prevalence rate have to get to before it becomes an “urgent” issue?