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Unique Features of the
Long Term Planning and Support Program
Backed by OFCP and Available to All Age Groups:
The Long Term Planning and Support Program of the Ontario Federation
for Cerebral Palsy is an answer to the dreams of parents of children or
adults with disabilities. Over the past several years, we have researched
the problems faced by parents and we have developed a program that uniquely
addresses each of those concerns with one-of-a-kind solutions. Our program,
which is available to people of all age groups, is focused on the uniqueness
of individual family situations. We combine the strengths of the OFCP’s
financial and organizational structure with the innovative thinking of
our highly dedicated and enthusiastic people to provide each family with
a plan that is uniquely positioned to solve their problems and to help
to guarantee a better quality of life for the person with cerebral palsy.
Life Planning from Both the Person’s and Parent’s
Perspective:
The planning process begins with the development of a Life Plan for the
person with the disability. Our highly skilled and trained facilitators
meet with the person individually and examine a variety of things which
can affect a person’s quality of life. We develop a set of goals
and dreams with the person and eventually work toward achieving them.
We also carry out the same type of life planning from the perspective
of the parents of the person with the disability. We value their input
into the process and use their thoughts to elaborate and enhance the developing
Life Plan. As far as we know, no other organization in Ontario does this
and we believe that the end result is a plan that is very closely aligned
with the true vision of what a decent quality of life means to the person
with a disability.
Self-Contained General Information Package:
We also use our resources to assist families in the preparation of an
extremely comprehensive General Information Package. Over the years of
development of the Long Term Planning and Support Program we came to understand
the value in documenting information about the person with a disability
and his family so that it will be available in the future to caregivers,
family members, trustees, networks of support and the like. Far too often,
people neglect this area and valuable information is lost forever. The
General Information Package is stored on a self contained computer system
that allows instant access to the information when it is needed. A printed
version is also made available. At your request, we can become the emergency
contact person for organizations like MedicAlert so that information can
be available to them to ensure prompt medical attention when needed.
Photo I D Card and Emergency Information Booklet:
The Long Term Planning and Support Program also produces an emergency
contact Booklet and a Photo I.D. card which can be carried by the person
with a disability so as to ensure prompt sharing of vital medical and
contact information in the event of an emergency. The card and booklet
can speak for the person with a disability when they can not due to the
disability or to an accident or other emergency.
Paid Support Personnel as Well as Volunteers:
Our experienced knowledgeable and dedicated facilitators assist in bringing
resources and services into play to achieve these goals and dreams. Although
we appreciate and encourage the use of volunteers in many situations,
our facilitators are paid support personnel. We believe that having paid
staff members ensures consistency, as guarantees may not be available
when volunteers are the main driving force.
Maintain Our Own Support Service Database:
Our staff members have access to a database of support services in the
province and they frequently use this information to ensure that the highest
quality supports are in place for their client. A full time staff person
is charged with the responsibility of keeping this database as up to date
as possible.
Develop and Maintain Networks of Support for the Lifetime of the Person:
As part of the Long Term Planning and Support Program, we encourage the
use of volunteers in some situations. The Networks of Support are one
such situation. The idea is that the quality of life of a person with
a disability can be enhanced and enriched by having a group of family
and friends surrounding them. Often this naturally occurring network doesn’t
exist for a person with a disability. The paid facilitators of the Long
Term Planning and Support Program help in bringing together people who
want to become part of the support network and the person’s life.
The facilitators work with these volunteers and assist them in building
relationships with the person. Their involvement is on-going as they continue
to contribute to the network with resources, ideas and a solid foundation
for the life of the person with a disability. The fact that these are
ongoing, paid staff positions of the Long Term Planning and Support Program
helps to ensure that the Networks do not fade out when there are changes,
but will supported to exist for the entire lifetime of the person with
the disability.
Supports the Estate Planning Process:
Early in the development of the program, we realized that there was little
readily available information with respect to estate planning for our
families. Even organizations that one would expect to have information
available didn’t. As a result, the Long Term Planning and Support
Program has developed a book by Graeme Treeby entitled “Removing
the Mystery - An Estate Planning Guide for Families of People With Disabilities”.
It is a resource to families elaborating on how to approach the process
of planning for their sons and daughters with disabilities. It can provide
them with a deep understanding of the planning process or just an overview
of the unique planning issues that face them; issues like the Ontario
Disability Support Program (ODSP), Trusts, Wills, Funding Mechanisms and
so on. The Long Term Planning and Support Program has also developed significant
expertise in issues relating to qualifying for and retaining benefits
from the ODSP. People have rights under the ODSP which are often misunderstood
and we will work with them to ensure that they receive the benefits that
they are entitled to. When parents are ready to complete their estate
plans, we can provide them with a list of Estate Planners and Lawyers
who are knowledgeable in the area of planning for people with disabilities
or we can work with other people of their choice.
Legally Binding Contract Ensuring Future Services:
In order to ensure that the future is a secure place for the person with
a disability, we have taken steps into uncharted territory. We will enter
into a legally binding contract with the parents of the person with a
disability which will outline exactly what our role will be in the future,
after the parents have died. The contract leaves no question in the minds
of parents with respect to what will happen when they are gone.
Backing of Significant Reserve Fund and Constitutional Guarantees of the
OFCP:
The OFCP has always been concerned that we must be in a position to keep
the commitments that we make to families. The contract is designed to
provide some reassurances to families and the OFCP has taken more steps
to ensure that these commitment are fulfilled. They have also made changes
to the Constitution of the OFCP as well as setting aside a significant
reserve fund to be made available in the unlikely event that the organization
ceases to exist. In that case, the reserves will be used to ensure that
families continue to receive the supports that we committed to provide.
Provide Lifetime Supports:
The final phase of the Long Term Planning and Support Program takes place
once parents have died or are no longer able to care for their son or
daughter themselves. Time and time again we have heard parents say that
they are worried about what was going to happen when they are gone and
we felt that we needed to address that concern. We noted that some organizations
in Ontario are providing assistance to the maintenance of networks of
support but that was where their efforts ended. As a direct response to
that lack of support, our Lifetime Support Program was designed to extend
into additional areas. We will work with the Networks of support to ensure
that they are healthy and working well. In addition, we will make personal
visits to the home of the person with a disability to make a variety of
assessments relating to his or her quality of life and we will work with
existing caregivers to improve and enhance that quality of life. If we
should ever discover a problem with safety, abuse, or other issues, we
will take support actions to resolve the problem. We will also offer support
to the Trustees of the Henson Trust that the parents have created for
their son or daughter with a disability in their wills. No longer will
the Trustees be left on their own to find their way through the maze of
the Income Tax Act, Trust Act and the ODSP regulations. We will be there
to train them and to provide them with the information, resources and
supports they need. All of our activities will be documented and shared
with the people designated in the contract between the Long Term Planning
and Support Program and the parents. These reports will also be reviewed
by our compliance committee, which is made up of other members of the
Long Term Planning and Support Program, to ensure that we are living up
to the agreements that we made in the Contract. All of these features
are unique to our program and we believe that there is no substitute to
the peace of mind that they create.
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