[ St. Joseph's Hospital ]
A guide for parents and families with Special Babies from birth to 2 years old
Special Babies Have "Special Needs"
Describing Your Baby
Other Health Professionals
Caring for Special Babies at Home
Daily Living with your Special Baby
Services for Special Babies
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Introduction Special Babies Have "Special Needs" Describing Your Baby Doctors Other Health Professionals Hospitals Caring for Special Babies at Home Daily Living with your Special Baby Services for Special Babies The St.Joseph's Hospital Community Resource Manual
   Services for Special Babies

Finding services for special babies

There are many services that will help special babies but you may have trouble knowing about them or finding them.  The following services have been "discovered" by parents of special babies.  They are organized under headings that best describe the type of service provided.

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Advice from parents of special babies

You may not feel that you need, qualify for, or deserve some of the services described in the previous chapters.  Many of these services are paid for by your taxes and are there to support you when you need them.  Ask for help in filling out the forms.  Other parents and families of special babies and support groups can give you help that may prevent many frustrations.

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How babies grow and develop

Public Health Services

The Department of Public Health may have a Parent-Child Program which includes the following services for you and your baby:

  • developmental guidance
  • breastfeeding support
  • home visiting
  • phone counselling
  • post-partum support groups
  • food and nutrition information
  • individual and family counselling
  • community services information
  • immunizations
  • parenting help
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Parent and family support programs for infant development

These programs have many health professionals who can provide treatments that help your baby develop and help parents learn to provide care.

An Infant Development program may exist in your community, especially if you have a Child and Family Centre or a Children's Hospital.

  • Try to get a program newsletter if you cannot get to meetings.

  • The Ontario Association of Infant Development has a directory of Infant Development programs for the province of Ontario.

Your baby is eligible for these programs if he/she is "developmentally delayed" or "at risk" for delay.  This includes babies with genetic problems, prematurity, hearing and/or vision problems, and some with limited unknown causes.  If you need assistance with parenting skills, you may also qualify.

Professionals who work in these programs could include developmental pediatricians, physiotherapists, occupational therapists, speech and language pathologists and audiologists.

Parent participation is essential and you usually must live in the region.  Referrals can be made by family doctors, hospital?based professionals, social service professionals and parents.

To find these programs, call your hospital or child and family centre and ask for the parent support programs.

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Family Support Institute of Ontario

The Family Support Institute of Ontario is a growing network of parents of individuals with disabilities, and resource people who implement innovative ways to support and strengthen families.  This network supports families by building on their strengths rather than focusing on correcting weaknesses."

For more information contact:

Family Support Institute Ontario
180 Duncan Mill Road, Suite 600
North York, Ontario   M3B 1Z6
         (416) 447-9576
Fax: (416) 447-8974

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Respite Care

The term "Respite Care" is used to describe alternative or substitute care for your baby. The care may take place either inside or outside the home.

It is important, but not always easy, to provide relief for the primary caregiver of a special baby. It is especially difficult when the care your baby requires is complicated and frequent. The usual source of babysitters may not be available when a special set of skills is required for the care of your baby.

Respite Care may be available in your community from a number of sources. Your local hospital may provide a number of Respite Beds on the Paediatric Unit. There, care is provided by registered nurses who are fully trained to care for children with complex health care needs. You can often arrange to visit the unit with your baby prior to his/her admission in order to discuss his/her care requirements with the staff. If this is not possible, be sure to take a complete set of written instructions with you to the hospital. The nurses and staff need to know exactly what your baby's needs are.

There may be a charge for this service, or it may be covered under your health insurance. Be sure to find out before you arrange to leave your baby in the hospital. There may also be a Paediatric Chronic Care or Rehabilitation Facility in your community where respite care might be available. Call the facility and ask to speak to the manager.

Respite care may also be available in private homes in your community. Perhaps your local association for community living or local service club will have a number of trained people available to provide respite on a daily, weekend or weekly basis. You would have to ask if there is a charge for the service and whether anyone would be able to handle your baby's particular needs. Sometimes you might be matched up with a caregiver who can be specifically trained to care for your child. Call your public health nurse, your hospital, service clubs, or look under your regional government's social services area in the blue pages of your phone book. Contact the association for the developmentally handicapped or the association which represents the particular condition which affects your child. eg., Down Syndrome Association.

Respite care is an important aspect of planning for the care of your child. You may need time off in order to spend time with other children, to attend to your own health care needs, or just to "have a break". Having trained and knowledgeable caregivers on hand goes a long way to give a stressed parent additional peace of mind.

The availability of respite care varies from community to community. Ask your physician, public health nurse, therapist or any other health professional with which you have contact. One of them may help you find the appropriate care for your child.

For more information contact:

Canadian Association for Community Care
701-45 Rideau Street
Ottawa, Ontario   K1N 5W8
Tel:  (613) 241-7510
Fax: (613) 241-5923

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Financial Help

Special Services at Home (SSAH)

This program helps parents provide care at home for children with developmental disabilities.  Financial help may be provided to get necessary equipment and/or services at home which are not available in your community.  It can include the help of a "Special Needs Worker" who is trained in behaviour management or in teaching daily living activities.  All requests are individually evaluated and funding is usually provided for one year at a time.  It is wise to have a health professional help complete the required forms.

In Ontario, this program is funded by the Ontario Ministry of Community and Social Services (COMSOC).

Handicapped Children's Benefit (HCB)

This is a monthly allowance for children with physical, emotional or mental disabilities and helps parents meet the extra cost involved in raising a child with a disability.  For example, this fund can help with parking and transportation costs for special medical appointments.  The amount granted will depend on your family income and size.

For information call: 1-800-265-4197

The program is funded by the Ontario Ministry of Community and Social Services (COMSOC).

Family Benefits

Provincial income benefits, called Family Benefits, provide a monthly cash allowance/benefits for individuals and families in need of long-term financial help.

Eligibility is based on the need and the amount will vary with family size, age of children, living circumstances and/or other special needs.

The program is funded by the Ontario Ministry of Community and Social Services (COMSOC).

General Welfare Assistance (GWA)

Any person under 65 years of age and without a source of income, or not able to find employment or is unable to work because of illness or disability may be eligible for GWA.  Family income, assets and living circumstances will determine the amount of help granted.

For information, look in the blue pages of your phone book under Regional Services, Department of Social Services.

Special Income Unit

General Welfare Assistance (GWA) programs may include supplementary or special assistance through the Special Income Unit for equipment and or support, for example, respiratory needs, aero chambers, apnea monitors, and funerals.

Eligibility is determined by a needs test, however, if your family is currently receiving GWA (from the region) or Family Benefits (from the province/COMSOC) you automatically qualify for this assistance.

This service may not be available in every region.  Check with your local Department of Social Services.

Tax Benefits - Sales Tax

Some products you buy for your disabled child are exempt from provincial sales tax.  Items include:

  • artificial limbs
  • prosthetic/orthopedic appliances
  • hearing aids and batteries.

You may also be eligible to get back the sales tax when you buy a motor vehicle. The vehicle must be used in transporting a child with a permanent disability.

For information: 1-800-263-9229

Income Tax Credits

Check with your income tax office or ask for information guidebooks and forms to claim expenses for babies with special mental or physical problems.  You might get tax deductions for home renovations, equipment, drugs or transportation your baby needed.

Residential Rehabilitation Assistance Program

Federal or municipal funding may be available if you need to renovate your home.  You may need changes to fit special equipment or to improve accessibility for disabled babies.

Health Travel Grants for Northern Residents

Any northern resident who must travel to see specialists or get services can get funding.  These grants will reimburse you for mileage.  You require a referral from your local doctor, a health card number, and you must live in northern Ontario.

For information call: 1-800-461-4006

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Equipment and Supplies

Assistive Devices Program (ADP)

The ADP is run by the Ontario Ministry of Health.  It was established to help children with long-term physical disabilities get needed equipment and supplies.  ADP will pay a fixed amount or in many cases up to 75% of the cost of an item. 
Examples: diapers, catheters, braces.

Check with your insurance policy or with your insurance company as some of them will pay the remainder of the cost.  If you cannot afford to pay your share and your insurance company does not cover this or if you do not have insurance there are many organizations that may help - for example, Easter Seals, Lions and Rotary Clubs.

ADP will cover the following categories of equipment:

  • Communication aids
  • Hearing aids
  • Visual (seeing) aids
  • Respiratory equipment (oxygen)
  • Tube feeding supplies
  • Ostomy supplies
  • Orthotic devices (splints)
  • Seating aids (seats for pisture; corner seats)
  • Prosthetic devices
  • Wheelchair and mobility aids (strollers, walkers)
  • Diabetic supplies

Any Ontario resident who has a child with a long?term physical disability and a health card is eligible, whatever your income.  A medical doctor or a team of health care professionals can assess your child to find out what he/she needs.

For information: 1-800-268-6021

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Dental Care and Treatments

Cleft Lip and Palate

The Ministry of Health will pay 75% of the cost of a specialized dental treatment for children with severe dental problems.  Parents must register their child at a designated clinic to be eligible for assistance.

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Disabled Parking Permit

You can apply for a portable parking permit which is issued by the Ministry of Transportation.  This permit applies to any vehicle which is used to transport a child with a disability.  It is recognized in Ontario and other Canadian provinces and most states in the United States.  Applications are available from your local Ministry of Transport offices.

For information: 1-800-263-9229

Handicapped Buses

Use the yellow pages of your phone book.  Look for "Disabled Services" for the names of services in your area.

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General Help for Physically Disabled

Easter Seal Society

The Easter Seal Society helps children who are physically disabled because of congenital defects, infections or accidents, and helps families in all phases of rehabilitation.

Some of the services they offer:

  • nursing case management
  • immediate and long-term in-home family support services
  • access to professional and peer support
  • financial assistance
  • help to get local, provincial and federal programs/benefits that are geared to children with physical disabilities
  • diagnostic and treatment clinics in northern Ontario
  • printed and audio visual resource materials

For information: 1-800-668-6252-9229

Service Clubs

Local Service Clubs like the Kinsmen, Rotary, Lions clubs and many others will sometimes handle requests for help.

Your community directories, the telephone book, the public library and the Public Health Nurse can help you find these services.

Health Insurance

The provincial government sponsors Ontario's health care system.  Eligible people get hospital medical and other health care services.  You must have a health card to prove you are eligible.  New babies get this card once parents fill out the forms.

For information about Ontario Health Insurance Plans (OHIP) call 1-800-268-1153.

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Order in Council

Sometimes your needs cannot be met by the limitations of funding and services available from provincial government programs.  You can apply to receive an "Order in Council" that allows you to receive extra services that do not fit into the limits of existing program guidelines.

An example of an "Order in Council" would be that a family might receive 24 hour nursing care to allow a child to remain at home during an acute phase of an illness, or at the end stage when he/she is dying.

You apply for an "Order in Council" by contacting the Ministry of Community and Social Services in your area or by calling 1-800-361-0897.

An "Order in Council" must be approved by the provincial cabinet.  Your local MPP may be able to help you.  You can contact him/her in the constituency office in your area.  If you do not know your MPP, look in the Blue Pages of your telephone book, under Ontario Government and then under "M" for Members of Provincial Parliament.  Your riding phone number will be listed.

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