Ombudsman Ontario

Ombudsman Ontario

September 01, 2005 11:00 ET

Ombudsman Finds Ministry Bound By Its Own Red Tape

TORONTO, ONTARIO--(CCNMatthews - Sept. 1, 2005) - Bureaucratic obfuscation, errors, excuses and omissions are just some of the criticisms Ombudsman Andre Marin leveled at officials at the Ministry of Health and Long-Term Care in his report titled, "From Hope to Despair".

The Special Ombudsman Response Team's (SORT) 35-day investigation into the provincial government's refusal to provide funding for a life-saving drug for Barrie teenager, Christopher Comeau-D'Orsay, resulted in the Ombudsman issuing a 40-page report released today. The report took the Ministry of Health and Long-Term Care to task on several issues, finding its conduct to be unreasonable, unjust, oppressive and wrong.

Seventeen-year-old Christopher suffers from a very rare, fatal neurodegenerative disease known as Batten's Disease CLN 1. The Ombudsman's report finds the Ministry's responses to requests for funding of Christopher's Cystagon were confused and lethargic. In addition, the report shows how Ministry officials constructed road-blocks to deny him the help he should have received, had its programs been operating as they were intended to.

"Rather than chose to help Christopher, for years the Ministry tied its own hands, putting its programs before people," Mr. Marin said. "Christopher's family experienced an exercise in bureaucratic futility that no Ontarian should ever be subjected to. I have made three recommendations to the Ministry of Health and Long-Term Care to address this case."

Mr. Marin added, "The final chapter to this horrible saga was written earlier this week and it has a happy ending. I am pleased to report that the Ministry has accepted all our findings and recommendations and will be implementing them immediately. Despite the many trials and tribulations that the Comeau-D'Orsay family endured for years, the Deputy Minister and Minister have answered this office's call for help and I commend their leadership on this important issue."

This press release is also available in French. An electronic copy of the report "From Hope to Despair" is available on Ombudsman Ontario's website: www.ombudsman.on.ca.

The Ombudsman is an Officer of the Legislature and is independent of both the political process and government administration. Generally an office of last resort, the Ombudsman investigates and resolves complaints about provincial governmental organizations and recommends corrective action. Services are free and confidential. Other languages can be arranged. For further information, call 416-586-3300, 1-800-263-1830 (English); 1 800 387-2620 (Francais); TTY 1-866-411-4211 or visit our website: www.ombudsman.on.ca



Comeau-D'Orsay Investigation


Chronology


May 30 2005 Complaint received by Ombudsman Ontario (OO) from
Comeau-D'Orsay family

early June OO makes inquiries, gathers background information
with MoHLTC and attempts to resolve informally

June 20 OO advised by senior MoHLTC official that as
Cystagon is not approved by Health Canada, MoHLTC
cannot pay for it

July 11 OO continues informal inquiries with Health Canada
Special Access Programme, senior MoHLTC officials.
No movement on MoHLTC's part

July 12 Special Ombudsman Response Team (SORT) assigned to
review case

July 15 OO notifies MoHLTC of intent to formally
investigate. SORT assigns resources and develops
investigative plan

July 18 Comeau-D'Orsay family interviewed by SORT
investigators

Letter sent to MoHLTC requesting all documents
concerning Comeau-D'Orsay case and associated
policy

July 19 SORT investigators interview senior MoHLTC
officials

July 20 Christopher Comeau-D'Orsay's treating neurologist
interviewed by investigators

July 22 SORT interviews second group of senior MoHLTC
officials

July 25 Interim response to notice of intent to
investigate received from the MoHLTC

August 2 Documentation requested in OO letter of July 18
received from MoHLTC

August 3 Toronto Hospital for Sick Children expert in
Inherited Metabolic Diseases interviewed by
investigators

August 5 Written response to notice of intent to
Investigate received from Deputy Minister MoHLTC
outlining why they will not pay for Cystagon for
Christopher

Misc From July 15 to early August, SORT investigators
contacted numerous Ontario hospitals re: Cystagon,
spoke to Health Canada officials and others,
including the sole distributer of the drug, and
conducted extensive research

August 19 Preliminary Report sent to the Deputy Minister and
Minister of Health and Long-Term Care

August 29 Deputy Minister attends OO to present Ombudsman
with response to Report. MoHLTC accepts all
recommendations



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