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 ORSA and in no way does ORSA guarantee funding or support from any of these programs or associations.
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.
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.
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.
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
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.
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 ORSA and in no way does ORSA 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:
Eligibility
The child:
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:
Incontinence Supplies Grant Program-https://services.easterseals.org/incontinence-supplies-grant/
The Incontinence Supplies Program is for children and youth who:
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:
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:
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 | ORSA
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/