Pediatric Community Services
During and following your child's treatment course you may become aware of
some obvious changes in your child's physical, intellectual and emotional
state. Some of these changes may initially be less apparent and go unnoticed
until the active treatment ends and you begin to pick up the pieces of your
lives.
At all stages, there are health care professionals and community resources in
place designed specifically to assist you in meeting your child's unique needs
and optimizing his/her potential.
Physical needs will be addressed by the rehabilitation team (physiotherapy and
occupational therapy), educational and emotional needs by the psychology
department and social needs jointly by the departments of psychology and
social work.
If these services are not made readily available to you through your main
treatment team, ask. Together, a program can be set up to meet your child's
needs in the least disruptive and most helpful way.
Physical Needs
Rehabilitation will start the moment your child recovers from surgery and
continue in the community setting after discharge from the hospital.
Psychological Needs
Your child and his/her siblings may experience difficulties adjusting to the
diagnosis of a brain tumor and the treatment it entails. The psychologist at your
child's hospital or school may help you in this regard.
New learning difficulties may arise as a direct result of the tumor or its
treatment, or as a consequence of the tremendous stress of such an illness.
Again, psychologists in both settings can help assess your child to identify
these needs, and work with yourself and the teachers to design a program to
cater to these areas.
Social Needs
As a family unit, there are real, practical concerns which may arise as a result
of a diagnosis of a brain tumor. The Social Worker at your hospital plays a key
role in accessing community resources and services for you. Additionally,
there are support groups and children's camps designed to address your child's
needs (and your needs).
"Wishes"
There are a number of organizations / foundations whose mandate includes
facilitating a "wish" of a child who has a life-threatening illness or a severe
physical difficulty. Applications for a child's wish may need to be supported by
a physician.
Should you wonder if your child qualifies for a "wish", consult first with your
child's attending physician. Then, approach your social worker for information
concerning the application process.
Services in the Community
Government Services
There are many government services offered to patients and their families to
assist them through this difficult time. Listed below is a brief description of the
types of services that may be offered by your Provincial, State or Federal
government.
To determine what services you are eligible for and are available in your area,
you should contact your Social Worker.
Home Care Program
Most provinces have a Home Care program
available for patients who require professional health care services in the
home. Nursing, physiotherapy, occupational therapy, speech therapy and
homemaking are often included in these services. Social services and
nutritional counselling may also be available. Home Care may be contacted
before discharge from hospital.
Auxiliary services which may be provided include transportation, dressings,
lab tests, Meals on Wheels and some medical supplies.
A physician referral is necessary for Home Care services.
Homemakers Service
Homemakers can be provided upon physician
referral through Home Care with no cost to your family, or on a fee-for-service
basis at a fixed hourly rate which can be arranged directly by you and your
family.
Homemaking through the Home Care Program is generally available only
when a professional service such as physiotherapy or nursing is also required.
There are some exceptions in certain areas of the country.
Some families choose to extend the homemaking service by paying for extra
hours of homemaking service above and beyond that which Home Care
provides.
Services provided by the homemaker are: light housekeeping, meal
preparation, laundry, hygiene and ambulatory assistance.
Homemaking Services are also available from the Canadian Red Cross only in
the province of Ontario. Limited homemaking services are available in Nova
Scotia and New Brunswick. These services are available from other agencies
in all provinces.
Public Health Nursing
Most provinces have Public Health Nurses
available through the local health unit. The Public Health Nurse is a registered
nurse with additional training in community health nursing. The nurse is aware
of community and provincial resources and services and can help you to use
these as required. The nurse can also assess the physical and emotional needs
of you and your family and can offer supportive counselling to all family
members. The nurse can as act as a liaison between the family and other health
care providers.
There is no fee for this service and a physician referral is not required.
Tax Deductions or Exemptions
Your provincial tax office or accountant
can help you in determining your eligibility for any tax deductions or
exemptions as a result of your health situation. General examples of such
deductions or exemptions are:
- Vehicle tax refunds for the physically disabled,
- Property tax exemptions resulting from home improvements or renovations
aimed at assisting a disabled person.
- Disability deductions.
- Disability exemption on your tax return.
Some specific examples include:
- Handicapped Children's Benefits:
An allowance for handicapped children
with severe functional losses to cover extraordinary expenses over and above
those expected for a non-handicapped child.
Basic entitlement ranges between the minimum of $25.00 to the established
maximum of $375.00 monthly. The actual amount granted will reflect the
additional monthly costs associated with the handicapped child's special needs
and is also dependent upon a family's total (gross) income.
Drug benefits and a dental card will automatically be made available to your
child when Handicapped Children's Benefits are approved.
- Disability Tax Credit:
Available to you should you or your dependent have a
severe and prolonged mental or physical impairment which markedly restricts
you or your dependent's ability to perform one or more basic activities of daily
living all or a majority of the time.
The impairment must have lasted or be reasonably expected to last for a
continuous period of at least 12 months.
Application is assessed on the basis of functional loss rather than upon
diagnosis or duration of a disease process. Treatment therapies for a disease or
its sequelae are given consideration only when such health interventions bring
about a marked restriction in one or more basic activities of daily living.
Many of the children treated by the Oncology team will not qualify for this
credit. You are, however, encouraged to discuss your child's particular
circumstances with his/her attending physician should you question his/her
eligibility.
Forms may be available from your child's physician, social worker, or through
your local Revenue Canada Taxation office.
Canadian Cancer Society
Currently, there are ten divisions of the Cancer Society in Canada. These
divisions are divided into districts and units. There are also other similar
programs available to cancer patients across the country. Actual services will
vary somewhat from centre to centre. Listed below are general programs that
may be available. Call your local society for details in your geographic area.
- Clinic and Lodge Services: Volunteers offer support to patients and their
families in cancer clinics and lodges.
- Cansurmount: One to one patient visits by volunteers whose lives have
been touched by cancer.
- Friendly Visitors: Volunteers offer friendship and support to cancer
patients and their families.
- Living with Cancer Groups: Self-help groups for adults led by trained
volunteers.
- Financial Assistance: The following may be available with authorization
from the Society: limited homemaking, dressings, some drugs, medical
equipment and supplementary food.
- Transportation: Provided from home to cancer treatment centre and back.
- For further information regarding these services, look in your telephone
book for your local Cancer Society listing.
Canadian Red Cross Society
This is a nationwide organization which can provide beneficial supportive
services once discharged home from hospital.
Services across Canada can vary on a regional basis. It is therefore important
to contact the local regional branch. The services provided consist of
equipment loans and homemaking services.
Equipment Loans
Equipment can be borrowed from the Red Cross for a
period of three months, or up to six months if necessary. Equipment loans are
available across Canada as well as from chapters across the United States.
When your child is discharged from hospital, and equipment is required, you
must obtain a referral from your doctor so that the equipment loan is
appropriate to his/her needs. Items available include wheelchairs, walkers,
raised toilet seats, commodes, canes and crutches. The Red Cross no longer
loans out hospital beds, but the workers will assist you in obtaining one if
needed.
Easter Seal Society
This organization provides services to children nineteen years of age and under
with physical disabilities. Your child may be eligible for assistance with
transportation, drugs, equipment loans and renovations.
Canadian Medic Alert
Canadian Medic Alert provides necklets or bracelets with engraved tags that
have personal medical information. They are designed to communicate
medical information in the event your child is unable to respond. It can list
special medical conditions, allergies, medications or implants (e.g.
pacemakers). If your child has a brain tumor, he/she should have a
medic alert bracelet. The possibility of seizures should also be
noted on the bracelet.
Each individual member has a personalized identification number on the tag.
This number is listed with Medic Alert and is accessed by a 24 hour telephone
number. Medic Alert is a nonprofit organization with an internationally
recognized symbol. There is a fee. A variety of necklets or bracelets are
available at additional cost. Applications are available at most hospitals,
pharmacies or doctors' offices.
The address of Medic Alert in Canada is:
293 Eglinton Ave. East,
Toronto, Ontario
M4P 2Z8
ChildCan
ChildCan is a Canadian registered charitable organization, established in 1974,
comprised of, and operated by, concerned parents of children who have been
diagnosed with cancer.
ChildCan funds research projects, as well as offering psychosocial support
programs such as a school reintegration program and an art therapy program.
Monthly support group meetings, special family activities and educational
information concerning pediatric cancer are also offered to families by
ChildCan.
ChildCan serves Southwestern Ontario through the Children's Hospital of
Western Ontario. For more information, ChildCan's mailing address is:
ChildCan
1105 Wellington Rd. South,
P.O. Box 9038,
London, Ontario, Canada
N6E 1V4
There may be a similar group in your area. Inquire at your child's hospital.
Camps
In many areas, with the support of a variety of local affiliations, camps have
been developed to bring families together to share their common experiences
and find support while participating in a relaxing outdoor-based program.
The goal of the camps is to provide young cancer patients, siblings, their
parents and bereaved families with an environment and resources to enhance
their quality of life. Often, year-round recreational and support programs are
available. Some may also have a newsletter highlighting new programs and
featuring articles on topics of interest.
These camps may be a welcome break for everyone from the stress of
treatment, and its consequences, and the feelings of being alone in the
experience of dealing with the diagnosis of a brain tumor.
We encourage you to inquire at your child's hospital as to the existence of any
such camps near you.
Other Services
There may be other programs available to you in your province or locality.
Again, the social worker in your hospital will be aware of what is available and
may be of use to your child. The following list includes some programs and
associations from which your child may benefit:
- Handicapped Children's Benefits
- Assistive Devices Program
- Infant Stimulation Program
- Cancer Camps for children
- Support groups for parents and/or children
- Hospices
- Bereaved family groups
- Learning disability associations
- Government sponsored programs for pre-employment training and life skills
- Spina Bifida and Hydrocephalus Association
- Canadian National Institute for the Blind
- Canadian Hearing Society
- Children's Aid Society
- Epilepsy Canada
Palliative / Hospice Care
Patients and families faced with diagnosis of a brain tumor hope that the
surgery or other treatments will eliminate the tumor. At some point along the
treatment course, it may become evident that although the therapies are
improving the symptoms, the tumor(s) continues to grow or return.
It is at this time that palliative or hospice care may be offered.
Palliative/hospice care is a special form of care designed to promote both
physical and emotional support to persons facing incurable illness. The focus is
on hope and living. Expertise in pain management and other aspects of
physical comfort are also available.
This care is provided at home, in hospital or in special care facilities. The
patient and family are at the centre of all decisions regarding care.
A team of professionals and trained volunteers offers support and information
regarding medical and emotional issues. The presence of these individuals
enables both the patient and family to deal with these areas of concern.
For people who choose to receive care at home, there are community hospice
groups across the country. These groups use professionally trained volunteers
who offer sensitive support and care for your family members who often
become both physically and emotionally exhausted.
Bereavement
The death of a child seems so unfair and the grief a family feels is part of a
normal healing process. The feelings of disbelief, sorrow, anger and guilt that
can be part of this grief are often overwhelming. Families feel intense
emotional pain, loneliness and a loss of purpose; their lives will never be the
same again.
Organizations such as "Bereaved Families" exist in many major centres. These
organizations have trained volunteers who have experienced their own
personal losses and can offer support and counselling. There is a common bond
between parents and family members who have lost a child, and that feeling
does not depend on the age of the child or the circumstances. If you feel you
and/or your family could benefit from contacting such an organization, feel
free to contact your family physician or hospital Social Work department.
There is no need to be alone at such a difficult time.
