P.O. Box 50030 London, ON N6A 6H8 info@rett.ca (519) 474-6877

Supports

Below is a list of government programs and associations that may assist individuals with Rett syndrome.  These programs and, associations are not related to or recommended by O.R.S.A. and in no way does O.R.S.A. guarantee funding or support from any of these programs or associations. 

GOVERNMENT PROGRAMS 

Disabled Person Parking Permit – http://www.cra-arc.gc.ca/E/pbg/tf/t2201/README.html 

Exceptional Family – http://www.miriamfoundation.ca/ 

Respite Services – http://www.respiteservices.com/ 

Passport for Adults – https://www.mcss.gov.on.ca/en/mcss/programs/developmental/servicesupport/passport.aspx 

March of Dimes – https://www.marchofdimes.ca/en-ca/programs/ddlsp/passport 

March of Dimes (Home & Vehicle Modifications) – https://www.marchofdimes.ca/en-ca/programs/am/hvmp 

Child Disability Benefit-https://www.canada.ca/en/revenue-agency/services/child-family-benefits/child-disability-benefit.html 

Disability Tax Credit-https://www.canada.ca/en/revenue-agency/services/tax/individuals/segments/tax-credits-deductions-persons-disabilities/information-medical-practitioners/eligibility-criteria-disability-tax-credit.html 

Assistive Devices Programs – Ontario 

Through the Assistive Devices Program (ADP), help people with long-term physical disabilities pay for customized equipment, like wheelchairs and hearing aids. 

The ADP also helps cover the cost of specialized supplies, such as those used with ostomies. 

Special Services at Home  

http://www.children.gov.on.ca/htdocs/English/specialneeds/specialservices.aspx

Assistance for Children with Severe Disabilities 

http://www.children.gov.on.ca/htdocs/English/specialneeds/disabilities.aspx

Family Managed Home Care

Family-Managed Home Care | Home and Community Care Support Services (healthcareathome.ca)

Enhanced Respite Funding 

This grant is paid to families who are caring for a child who is medically fragile and/or depends on a technological device, and requires care 24 hours a day, 365 days a year. It is provided in addition to other respite services. Families may be eligible for up to $3,500 per child, per year. 

Families who may qualify for this grant have children who: 

  • rely on medical and technological equipment, such as mechanical ventilators, apnea monitors, renal dialysis, urinary catheters, colostomy bags, or 
  • are administered drugs intravenously, or 
  • rely on tracheotomy tube care, suctioning, oxygen support or tube feeding 

Eligibility 

The child: 

  • is under 18 years of age 
  • lives at home and 
  • needs intensive care and constant monitoring on a 24-hour basis. 

How to apply 

119 King Street West 
Hamilton ON L8P 4Y7 

Tel: 905-521-7280 
Fax: 905-546-8277 
TTY: 1-866-221-2229 
TTY: 905-546-8276 

Easter Seals Canada-https://easterseals.ca/english/about-us-2/programs-and-services-2/ 

ASSISTIVE & ADAPTIVE TECHNOLOGY 

Easter Seals provides financial assistance and delivers a range of direct-to-client programs to help ensure that Canadians living with disabilities have access to the essential assistive, adaptive, communications and learning technology they need to access their world and maximize their independence.  This includes things like: 

  • Mobility equipment such as wheelchairs, walkers, specialized strollers, scooter devices, leg braces and splints 
  • Home modifications such as ramps, elevators, porch lifts, stair lifts and ceiling track lift systems 
  • Augmentative communication devices such as communication boards, speech aids, computers and writing aids 
  • Bath and toileting aids such as shower/bath chairs, commode chairs, and transfer aids/lifts. 

Incontinence Supplies Grant Program-https://services.easterseals.org/incontinence-supplies-grant/ 

The Incontinence Supplies Program is for children and youth who: 

  • are residents of Ontario between the ages of 3 to 18 years 
  • have a valid Ontario Health Card 
  • have a chronic disability (physical or developmental) that results in irreversible incontinence or retention problems, that is lasting longer than six months and require the use of incontinence supplies 

Incontinence means loss of bladder or bowel control. 

Incontinence supplies include diapers, pull ups, attends, swimmers and catheters including straight, foley and drainage bags. 

The grant does NOT cover gloves, wipes, creams, clothing, bed linens, laundry detergent. 

Who is Eligible? 

The Incontinence Supplies Grant program is for children and youth who: 

  • are residents of Ontario between the ages of 3 to 18 years 
  • have a valid Ontario Health Card 
  • have a chronic disability (physical or developmental) that results in irreversible incontinence or retention problems lasting longer than six months and require the use of incontinence supplies 

Make-a-Wish Canada-https://makeawishtco.ca/?_ga=2.145857716.1657776532.1604714315-1309232627.1604714315 

SUPPORT SERVICES 

CONTACT Hamilton 

Local Health Integration Network 

http://healthcareathome.ca/hnhb/en/Getting-Care/Patient-and-Caregiver-Resources/Frequently-Asked-Questions

​211 Pritchard Road, Unit 1 Hamilton ON  L8J 0G5 ​905-523-8600 

Poppy Trust Funds (legion.ca) 

Use of Poppy Trust Funds 

Through your donations to the Legion Poppy Fund, the Legion provides financial assistance and support to Veterans, including Canadian Armed Forces and RCMP, and their families who are in need. Poppy Funds may be used for: 

  • Grants for food, heating costs, clothing, prescription medication, medical appliances and equipment, essential home repairs and emergency shelter or assistance for Veterans and their families in need 
  • Housing accommodation and care facilities for Veterans 
  • Funding for Veteran Transition Programs that are directly related to the training, education and support needs of Veterans and their families 
  • Comforts for Veterans and their surviving spouses who are hospitalized and in need 
  • Veterans’ visits, transportation and day trips 
  • Accessibility modifications to assist Veterans with disabilities 
  • Educational bursaries for children, grandchildren and great-grandchildren of Veterans 
  • Support of cadet units 
  • Veteran drop-in centres and services in communities where Veterans would benefit 
  • Community medical appliances, medical training and medical research which will assist in the care of Veterans in the community 
  • Support the work of Legion Command and Branch Service Officers across Canada in assisting and representing Veterans 
  • Donations for relief of disasters declared by federal or provincial governments which impact Veterans in those communities 
  • Promotion and administering of Remembrance activities to ensure Canadians never forget the sacrifices of Canada’s Veterans 

Poppy Trust Fund Administration 

The Poppy Campaign is organized and run by local Legion volunteers at over 1400 branches across Canada and abroad. Poppy Funds are held in trust at every level of the Legion and the use of these trust funds are strictly controlled, with appropriate approval processes. Branch executives are accountable for Poppy Fund expenditures and are required to inform the public through local media of the results of their campaign, including contributions received and disposition of funds. You may contact your local Legion branch to request information on their Poppy Campaign. 

Airline travel discounts 

Air Canada Our accessibility services (aircanada.com) 

West JetGuests with special needs | WestJet official site 

PorterDisability assistance. Travelling with an impairment | Porter Airlines (flyporter.com) 

ONTARIO RETT SYNDROME SPECIFIC SUPPORT 

Ontario Rett Syndrome Association-https://www.rett.ca/ 

Ontario Clinics-Clinics – Ontario Rett Syndrome Association | O.R.S.A. 

Rett University-https://rettuniversity.org/ 

Facebook 

Ontario Rett Family Group – https://www.facebook.com/groups/480308855360671 

Rett Syndrome and Speech and Language Therapy – https://www.facebook.com/groups/451858218222216 

Rett Syndrome – Communication and Literacy for Children – https://www.facebook.com/groups/1587583214805473 

ASSOCIATIONS 

CDKL5 

International Rett Syndrome Foundation – http://www.rettsyndrome.org/ 

Manitoba Rett Syndrome Association – http://www.rettsyndrome.mb.ca/ 

Rett Syndrome Association of UK – http://www.rettuk.org/ 

Rett Syndrome Society of Alberta – http://www.rettsyndromealberta.org/ 

Rett Syndrome Society of B.C. – http://www.rettbc.ca/ 

Saskatchewan Rett Syndrome Association – https://www.facebook.com/SaskRett 

C.O.R.D. – https://www.raredisorders.ca/ 

Neurological Health Charities Canada (NHCC) – http://www.mybrainmatters.ca/ 

Ontario Association of CCAC – http://oaccac.com/