Ten Questions for Ontario’s Political Parties
From the Ontario Autism Coalition
Election 2011

ISSUE #1: THE IBI WAITLIST

Background

In 2003, there were roughly 1,100 children with autism on the waiting list for IBI therapy. Recent figures indicate that today, now more than 1,500 are waiting. Wait times are still two to four years long, and families continue to sell assets, re-mortgage their homes and go into debt to pay for therapy while waiting for government funding. All the research on autism tells us that in order to be effective, intervention needs to be both early and intensive. The Ontario Autism Coalition has repeatedly told the provincial government that the IBI waitlist could be reduced without a significant increase in spending if more funding were put towards the Direct Funding Option, rather than the more expensive and bureaucratic Direct Service Option. . However, regional programs continue to pay themselves first, giving only small leftovers to DFO providers. There are also serious concerns about eligibility assessments, the lack of accountability for the Regional Programs that administer the IBI program, and the premature discharging of children from IBI without proper discharge assessments. (See OAC Recommendations # 4-18)

QUESTIONS:

1. If elected, what steps would your party take to reduce the IBI waitlist and ensure that all individuals with autism who need IBI receive it in a timely fashion?

2. Will your party commit to ensuring that all families of children with autism are given a choice between DFO and DSO funding?

3. How would your party ensure accountability for the Regional Service Providers?

ISSUE #2: AUTISM SERVICES IN SCHOOLS

Background

Students with autism still face significant challenges in Ontario’s schools, as do the teachers and other professionals who do their best to help them. Although some educators (14,000) have received ABA training , the vast majority of them (114,000) have not. School boards are scrambling to meet the needs of the 1 in 110 children who are now diagnosed with autism , and although some specialized programs and pilot projects have been successful, the availability of these programs is very inconsistent across the province. Students with autism are frequently segregated from their peers, bullied, suspended because of their challenging behaviours, asked to stay home from school, or permitted to attend school on only a limited basis. IBI therapists trained to work with children with autism and deemed totally acceptable to the Ministry of Children and Youth Services are still routinely barred from entering classrooms —even when families are willing to pay out of their own pockets in order for their child to receive this crucial support. A large number of students with autism do not get the support of an Educational Assistant (EA) or a Special Needs Assistant (SNA) at all, and many EA’s & SNA’s have no specialized training or experience with autism. The Ontario Autism Coalition has recommended that those who are supporting children with autism in a classroom setting must be appropriately trained in ABA and should be periodically supervised to ensure the integrity of their technique. (See OAC Recommendations #19-25)

QUESTIONS:

4. If elected, what steps will your party take to ensure that appropriate, evidence-based practices are used in all Ontario classrooms to ensure that students with autism receive the educational programming they need?

5. Would your party allow IBI therapists to enter schools to provide the additional support students with autism so desperately need?

6. How will your party ensure that those working as assistants supporting students with autism are properly trained and supervised?

ISSUE #3: REGULATION OF IBI THERAPISTS

Background:

The Ontario Autism Coalition has been urging the Ontario government to regulate IBI therapists since 2005, and yet no move has been made to do so. As a result, there is no minimum level of training for therapists, and no regulatory agency that families can appeal to if a therapist behaves in an unprofessional or unethical manner. Individuals with autism and their families deserve to know that the professionals who work with them are properly trained, supervised, and held accountable for the quality of their work. A regulatory framework would also ease possible concerns for teachers, EA’s and SNA’s when IBI therapists seek to work in a classroom setting to support students with autism. (See OAC Recommendations #26-29)

QUESTION:

7. If elected, will your party commit to establishing a regulatory body to oversee IBI therapists in Ontario?
ISSUE #4: FUNDING

Background:

Families raising children with special needs, including autism, face huge challenges when it comes to managing simple day-to-day tasks. Driving to specialist appointments, accessing community programs such as sports teams or summer camps, finding babysitters who can handle a special needs child, purchasing specialized equipment and even keeping up with housekeeping all place additional stressors on special needs families. To access funding and support, families in Ontario must navigate through a complex system of applications, programs and bureaucracies that often do not collaborate effectively with one another. The Special Services at Home program went from having no waitlist in 2008 to a current waitlist with over 7,000 families on it. The Passport program now has over 4,000 people on its waitlist. The ODSP program has been criticized for failing to provide people with disabilities with an adequate standard of living, and for the inconsistent provision of benefits. (See OAC recommendations 37-45)

QUESTIONS:

8. If elected, will your party commit to eliminating the SSAH and Passport waitlists?

9. What steps would your party take to improve the ODSP?

10. How will your party improve the lives of adults living with autism?

1. What’s new at the OAC— our pre-election planning
2. New numbers on IBI discharges—Freedom of Information Request from Andrea Horvath
3. Has your child been discharged from IBI without receiving a proper discharge assessment report?
4. Article from Ottawa Sun regarding lack of discharge assessments
5. CAMH survey regarding autism and health care
6. Five questions to ask your federal election candidate
7. Tell us what they said
8. Important hearing—complaint regarding IBI discharge decision before the Health Professionals Appeal & Review Board.

The award winning documentary, Benchmarked, is now available on line.

Produced in 2009, the film follows OAC co-founders Bruce and Laura McIntosh and documents the challenges they face raising a son with autism in Ontario. The film also features the story of Paul Certetti, a Hamilton single father struggling to keep IBI services for his daughter, Delanie.

To watch the film, visit the website below:

http://video.aol.ca/video-detail/benchmarked/918125918/?icid=VIDLRV02

Please share this film with your friends!

FOLLOW-UP

Since the film was made, both Delanie and her twin sister have lost their IBI funding. After losing his heroic court battle against the government, Paul has now founded the Autism Assistance Program, which provides IBI for families who are either waiting for or who have been denied funding. He’s put together a fantastic team of volunteer therapists from McMaster University in Hamilton, and now that both of his daughters are getting the help they need, he’s doing all he can to help others.

Bruce and Laura’s son, Clifford, lost his funding in the fall of 2009. He quickly regressed, and soon exhibited aggressive and violent behaviours. Bruce and Laura soon realized that there are no emergency services for an aggressive autistic youth who is in meltdown, and found themselves turned away from several different hospitals in the GTA. Cliff spent two weeks in a children’s mental health unit in the spring of 2010, but the staff in that unit had no experience with autism and quickly found themselves overwhelmed. Bruce & Laura re-financed their mortgage to pay for private IBI in the summer of 2010 and Cliff started at a new school. The school was clearly un-prepared to deal with a child like Cliff, and soon he found himself excluded from attending. When he returned, he was isolated, segregated from all other children and attended only for part days. After months of struggle, Bruce & Laura have finally found a full-day program offered in a public school that meets their son’s needs. They are now preparing to re-join the fight for other families, and are busy planning their strategy for this fall’s provincial election.

LATEST AUTISM STATS SHOW DISTURBING TREND: HORWATH

QUEEN’S PARK – The latest government statistics on autism services obtained by MPP Andrea Horwath show more children than ever are losing Intensive Behavioral Intervention (IBI) services, Ontario’s NDP Leader says.

According to quarterly figures for the period ending September 30, 2010, 240 children had their IBI treatment terminated, an increase of 266 per cent.

“It is very disturbing to see numbers that show more children waiting to be assessed and more being cut off, yet fewer receiving IBI services overall,” Horwath said. “The McGuinty Liberals announced $25 million to serve 8,000 children and will re-announce this in the spring, but their hidden numbers tell the tale. This is a cruel shell game. Ontario parents deserve better support for their children’s special needs and Liberals have been failing children with autism and their families.”

While 150 more children were cut off, 42 fewer overall (1404 children) were served by the McGuinty government’s autism program compared to the previous quarter ending June 30, the waiting list for assessment grew by 34 to 339 children. Altogether there were 1517 children waiting for treatment, 92 fewer than the previous quarter.

Horwath wants the McGuinty government to regularly and routinely make the quarterly autism statistics publicly available in real time.

She says the government’s new practice of benchmarking a child’s progress is helping to expel children from IBI programs over strong parental objections.

“Provincial autism numbers should be available region by region on the Ministry of Children and Youth Services website as soon as they are compiled. Families deserve to know not only waiting times and service numbers, but also the average wait time for IBI in Ontario,” Horwath said. “They shouldn’t have to wait almost four months to find out.”

Q2 for period July 1 to September 30, 2010

Number of children receiving IBI services: 1404

Number of children discharged: 240 Number of children waiting for treatment: 1517 Number of children waiting for assessment: 339

Q1 for period April 1 to June 30, 2010

Number of children receiving IBI services: 1446

Number of children discharged: 90 Number of children waiting for treatment: 1609 Number of children waiting for assessment: 305

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