This section of the web site contains some tools and techniques that are often used in the process of planning for people with disabilities. We recognize that each and every family's situation is unique. However, virtually every family can benefit from the use of these techniques. Before entering into the realm of planning for your son or daughter with a disability, you should become familiar with these tools and techniques. We don't expect you to become experts in Life Planning or Wills but you should have a basic level of understanding about the manner in which they interconnect in plans for the future of people with disabilities.
Where do you begin? You want the very best for your loved ones future. You know that to insure a bright future it will take more than a Will and some money in the bank. The traditional method of planning for the future was to write a Will and then to leave some money in an Absolute Discretionary Trust to provide for your loved one after you have gone. Today, we realize that it takes a great deal more planning. You need a Life Plan as well.
The Life Plan is intended to be a document that can be used to provide your family member's care givers and Trustees with a great deal of information after you are gone; information that may otherwise go to the grave with you. It is also designed to allow you to clearly describe the type of care and lifestyle that you wish to continue for your dependent with a disability.
We recommend a simple, straight forward approach to developing a Life Plan. The attached document represents a series of approximately 100 questions which are designed to assist you in the development of the Life Plan for your son or daughter with a disability. We suggest that you begin by answering the questions one by one and allow your mind to wander to whatever thoughts that the questions trigger. By doing this, you will be able to document a great deal more information about your child than would be possible by merely answering these questions directly. Your completed Life Plan should be reviewed on a regular basis to be sure that it contains up to date information concerning your child. Remember that wherever possible, the development of the Life Plan should include the person with a disability. After all, it is his or her life that will be enhanced by a well thought out and developed Life Plan.
The "Special Needs" Planning Group is viewed by many as an excellent resource for the development of Future Plans for people with disabilities. If you would be interested in receiving additional information about planning for people with disabilities, then please do not hesitate to contact The "Special Needs" Planning Group.
Relationship to individual with special needs:
To Whom It May Concern,
(Your child's name)
Name: List the full name of your child. Also the name he or she likes to be called.
Numbers: List the Social Insurance Number, Complete Address Town, County, Telephone Number for home and work, height weight, shoe size and clothing size.
More Details: List your child's gender, fluent language and religion. Indicate whether your child is a Canadian Citizen.
Birth: List your child's date and time of birth, as well as any complications. List your child's birth weight and place of birth as well as the city/town/country where he or she was raised.
Siblings: List the complete names, addresses and phone numbers of all brothers and sisters.
Marital Status: List the marital status of your son or daughter with a disability. If married, list the spouse's name, his or her date of birth, the names of any children and their dates of birth. Also list any previous marriages, as well as the names, addresses and phone numbers of the spouses and children from each marriage.
Other Relationships: List the special friends and relatives that your child knows and likes. Describe the relationship.
Guardians: Indicate whether any guardians have been appointed. List the name, address and phone number of each guardian and indicate whether that person is a guardian of the person or the guardian of the estate. If alternate guardians have been chosen, list their full names, addresses and phone numbers.
Trustee: Indicate whether you have set up a discretionary trust for your child and list the names, address and phone number of each trustee including alternates.
Power of attorney: If anyone has power of attorney for your son or daughter, list the person's full name, address and phone number. Indicate whether this is an enduring power of attorney.
Final arrangements: Describe any arrangements that have been made for your child's funeral and burial. List the full names of companies or individuals, their addresses and phone numbers. Also list all the payments made and specify what is covered. Indicate location of any contracts or agreements.
Otherwise, indicate your preferences (in consultation with your son or daughter if appropriate) for cremation or burial. Should there be a church service? If the preference is for burial, what is the best site? Should there be a monument? If cremation is the choice, what should be done with the remains?
MEDICAL HISTORY & CARE
Diagnoses: List the two main diagnoses for your child's condition, such as autism, cerebral palsy, Down Syndrome, epilepsy, impairment due to age, learning disorder, developmental delay, neurological disorder, physical disabilities, psychiatric disorder or an undetermined problem.
Seizures: Indicate the seizure history of your son or daughter: no seizures; no seizures in the past two years; seizures under control; seizures in the past two years, but not in the past year; or seizures currently.
Functioning: Indicate your child's intellectual functioning level (mild, moderate, severe, profound, undetermined, etc.)
Vision: Indicate the status of your child's vision: normal, normal with glasses, impaired, legally blind, without functioning vision, etc. List the date of the last eye test and what was listed on any prescription for eyeglasses. Hearing: Indicate the status of your child's hearing: normal, normal with a hearing aid, impaired, deaf, etc
Speech: Indicate the status of your child's speech: normal; impaired, yet understandable; requires sign language; requires use of a communication device; non communicative, etc.
Mobility: Indicate the level of your child's mobility: normal; impaired, yet self ambulatory; requires some use of a wheelchair or other assistance; dependent on wheelchair or other assistance; without mobility, etc.
Blood: List your child's blood type and any special problems concerning blood.
Regular physicians: List your child's regular physicians, including specialists. Include their full names, types of practice, addresses, phone numbers and the frequency and time of visits.
Previous physicians: List their full names, types of practice, addresses, phone numbers and the most commons reasons for which they were consulted. Describe any important findings or treatments.
Dentist: List the full name, addresses and phone number of your child's dentist, as well as the frequency of exams. Indicate what special treatments or recommendations the dentist has made. Also list the best alternatives for dental care in case the current dentist is no longer available.
Nursing Needs: Indicate your child's need for nursing care. List the reasons, procedures, nursing skills required, etc. Is this care usually provided at home, at a clinic or in a doctor's office. If appropriate, include the full names, addresses, phone numbers of any nurses that provide care on a regular basis.
Mental health: If your child has visited a psychiatrist, psychologist or mental health counsellor, list the name of each professional, the address and phone number as well as the frequency of the visits and the goals of the sessions.
Therapy: Does your child go to therapy (physical, speech or occupational)? List the purpose of each type of therapy as well as the name, address and phone number of each therapist.
Diagnostic testing: List information about all diagnostic testing of your child in the past; the name of the individual and/or organization administering the test address, phone number, testing dates and the summary of the findings. How often do you recommend that diagnostic testing be done? Where?
Genetic testing: List the findings of all genetic testing of your child and relatives. Also list the name of the individual and/or organization performing the tests, address, phone number and the testing dates.
Immunizations: List the type and date of all immunizations.
Diseases: List all the childhood diseases and the date of their occurrence. List any other infectious disease your child has had in the past. List any infectious disease your child currently has. Has your child been diagnosed as a carrier for any disease or condition.
Allergies: List all allergies and current treatments. Describe past treatments and their effectiveness.
Other problems: Describe any special problems your child has, such as bad reactions to the sun or getting staph infections if he/she gets to hot.
Procedures: Describe any helpful hygiene procedures such as cleaning wax out of the ears every few months or trimming toenails. Are these procedures currently done at home or by a doctor or other professional? What do you recommend for the future?
Operations: List all of the operations and the dates and places of their occurrence.
Hospitalization: List any other periods of hospitalization your child has had. List the people you recommend to monitor your child's voluntary or involuntary hospitalizations and to act as liaison with doctors.
Birth Control: If your child uses any kind of birth control pill or device, list the type, dates used and doctor prescribing it.
Devices: Does your child need any adaptive or prosthetic device, such as glasses braces, shoes, hearing aids or artificial limbs? List the manufacturing company(s) or supplier(s).
Medication: List all prescription medication currently being taken plus the dosage and purpose of each one. Describe your feelings about the medications. List any particular medications that have proven effective for particular problems that have occurred frequently in the past, and the doctor prescribing the medicine. List medications that have not worked well in the past and the reasons. Include medications that have caused allergic reactions.
OTC: List any over-the-counter medications that have proved helpful, such as vitamins or cold remedies. Describe the conditions helped by these remedies and the frequency of use.
Monitoring: Indicate whether your child needs someone to monitor the taking of medications or to apply ointments, etc. If so, who currently does this? What special qualifications would this person need?
Procurement: Does your child need someone to procure medications for him or her? If so, who?
Diet: If your child has a special diet of any kind, please describe it in detail and indicate the reasons for the diet. If there is no special diet, you might want to include tips about what works well for avoiding weight gain and for following the general guidelines of a balanced, healthy diet. You might also describe the foods your child likes best and tell where the recipes can be found for favourite dishes.
General Information: List the Father's full name, Social Insurance Number, complete address, phone numbers for work and home, date of birth, place of birth, city/town/country where raised, fluent languages, religion, blood type and number of siblings. Indicate whether he is a Canadian Citizen.
Marital status: Indicate the father's current marital status. If he is currently married, list the date of that marriage, and the number of children from that marriage. Also list the dates of any previous marriages; names of previous wives; and names and birth dates of children from each marriage.
Family: List the complete names of the father's siblings and parents. For all those still living, list their addresses and phone numbers, as well as something about them, especially about their relationship to your disabled son or daughter.
General Information: List the Mother's full name, Social Insurance Number, complete address, phone numbers for work and home, date of birth, place of birth, city/town/country where raised, fluent languages, religion, blood type and number of siblings. Indicate whether she is a Canadian Citizen.
Marital status: Indicate the mother's current marital status. If she is currently married, list the date of that marriage, and the number of children from that marriage. Also list the dates of any previous marriages; names of previous husbands; and names and birth dates of children from each marriage.
Family: List the complete names of the mother's siblings and parents. For all those still living, list their addresses and phone numbers, as well as something about them, especially about their relationship to your disabled son or daughter.
WHAT WORKS WELL FOR
Present: Describe your child's current living situation and indicate its advantages and disadvantages.
Past: Describe past living situations. What worked? What didn't work?
Future: Describe in detail any plans that have been made for your child's future living situation. Describe your idea of the best living arrangement for your child at various ages or stage, which of the following living arrangements would you prefer?
A relative's home (which relative?).
Supported independent living in an apartment or house with hours of supervision.
A group home with no more than residents.
A private group home (which one?).
Foster care for a child.
Adult foster care.
Parent-owned housing with hours of supervision.
Housing owned by your child with hours of supervision. etc.
Size: Indicate the minimum and maximum sizes of any residential option that you consider suitable.
Adaptation: Does the residence need to be adapted with ramps, grab bars or other assistive devices?
Favourites: List the favourite possessions that your child definitely would want to have in any living arrangement.
Community: List the types of places that would need to be conveniently reached from your child's home. Include favourite restaurants, shopping areas, recreation areas, libraries, museums, banks, etc.
DAILY LIVING SKILLS
IPP: Describe your child's current Individual Program Plan.
Current Activities: Describe an average daily schedule. Also describe activities usually done on "days off".
Monitoring: Discuss thoroughly whether your child needs some to monitor or help with the following items.
Self-care skills like personal hygiene or dressing.
Domestic activities like housekeeping, cooking, doing laundry or shopping for groceries and cleaning supplies.
Transportation for daily commuting, recreational activities and emergencies.
Reinforcement of social and interpersonal activities with others to develop social skills.
Caregiver's attitudes: Describe how you would like caregivers to treat matters like sanitation, social skills (including table manners, appearance and relationships with the opposite sex). What values do you want caregivers to demonstrate.
Self esteem: Describe how you would best reinforce your child's self esteem, discussing how you use praise and realistic goal setting.
Sleep habits: How much sleep does your child require? Does he/she have any special sleep habits or methods of waking up?
Personal finances: Indicate whether you child need assistance with personal banking, bill payments and budgeting. If so, how much help is needed?
Allowance: Indicate whether you recommend a personal allowance for your child. If so, How much? Also, list your recommendations about supervision of how the allowance is spent.
Schools: List the schools your child has attended at various ages and the level of education completed in each program. Include early intervention, day care and transition programs.
Current programs: List the specific programs, schools and teachers your child has now. Include addresses and phone numbers.
Academics: Estimate the grade level of your child's academic skills in reading, writing, math, etc. List any special abilities.
Emphasis: Describe the type of educational emphasis (such as academic, vocational or community based) that your child currently concentrates on. What do you think would be the best for the future?
Integration: Describe the extent that your child has been in regular classes or schools during his or her education. What are your desires for the future? What kinds of undesirable conditions would alter those desires?
DAY PROGRAM OR WORK
Present: Describe your child's current day program and/or job.
Past: Describe past experiences. What worked? What didn't? Why?
Future: Discuss future objectives.
Assistance: Indicate to what extent, if any, your child needs assistance in searching for a job, in being trained, in becoming motivated, and in receiving support or supervision on the job.
LEISURE AND RECREATION
Structured recreation: Describe your child's structured recreational activities. List favourite activities and favourite people involved in each activity.
Unstructured activities: What are your child's favourite means of self expression, interests and skills (going to movies, listening to music, dancing, collecting baseball cards, roller skating, etc.)? List the favourite people involved in each activity.
Vacations: Describe your child's favourite vacations. Who organizes them? How often do they occur, and when are they usually scheduled?
Fitness: If your child participates in a fitness program, please describe the type of program, as well as details about where and when it takes place and who oversees it.
Faith: Indicate which religion your child belongs to, if any. Indicate any particular denomination or church of which your child is a member.
Clergy: List any religious leaders, ministers, priests or rabbis familiar with your child. Include the names of the churches, synagogues or religious organizations involved. List their addresses and phone numbers. Also indicate how often your child might like to be visited by these people.
Participation: Estimate hoe frequently your child would like to participate in services and other activities of the church, synagogue or religious organization. Indicate how this might change over time. Also describe any big events in the past.
RIGHTS AND VALUES
Please list the rights and values that should be accorded your child. Here are some examples of what you might list:
To be free from harm, physical restraint, isolation, abuse and excessive medication.
To refuse behaviour modification techniques that cause pain.
To have age appropriate clothing and appearance.
To have staff, if any, demonstrate respect and caring and to refrain from using demeaning language.
Give an overview of your child's life and your feeling and vision about the future.
Describe anything else future caregivers and friends should know about your child.
FINANCES, BENEFITS AND SERVICES FOR
Assets: List the total assets your child has as of this date. Indicate how those assets are likely to change, if at all, in the future.
Cash income: List the various sources of income your child had last year. Include wages, government benefits, pension funds, trust income and other income. This might include Canada Pension Plan, Disability Benefit.
Services and benefits: List any other services or benefits your child receives. These might be special services for children at home; home help; employment assistance; housing assistance; legal assistance; library services; child special education; transportation assistance; and vocational rehabilitation services.
Gaps: Indicate whether any services or benefits are needed but not being received by your child. Indicate whether plans exist to improve the current delivery of services or to obtain needed benefits.
Expenses: List all expenses paid directly by your child in various categories, such as: housing, education, health care, recreation, and vocational training.
List all expenses paid directly by parents, guardians or trustees in various categories.
List estimates of all expenses paid by third parties such as; insurance companies, pay direct Health Plan or paying for residential services.
Changes: Indicate how your child's financial picture would change if one or both parents died. Be sure to list any additional cash benefits your child would be entitled to. Also list any cash benefits your child might be eligible for.
Will: Describe the location of any will for your child and provide the names, addresses and phone numbers of the lawyers involved and of the executors.
Safe-deposit box: List any safe- deposit boxes owned by your child, the addresses of the depository, the contents and the name of any person who has the power of attorney to enter the box.
Life Insurance: Describe any relevant life insurance, group or individual, on your child. List the face amount, the insurance company, policy number, beneficiaries and where the policy is kept. Indicate how this might change at the death of either parent. Contingent owner, loss of group coverage.
Burial papers: List the location of the documents of burial for your child, (deed to plot, instructions for burial, organ donations), the cemetery's addresses and the preferred funeral home.
Health insurance: Describe any relevant health insurance for your child, including hospital, major medical and accident insurance. List the type of coverage, the limit of benefits the insurance company, the policy number and the location of the policy.
Employment saving plans: Describe any relevant employee savings plans for your child, including the employer's name, type of plan, value and date of valuation.
RRSPs: Describe any RRSPs owned by your child. Indicate account numbers and financial institutions where invested. List any RRSPs owned by parents that can be transferred to the child at death of parent.
Income tax: Describe the relevant income tax information about your child. Indicate locations of the following papers; the records for the current year, the latest income tax return and its supporting documents and any earlier returns and documents if available.
Real estate: Describe the location of real estate records if your child plans to live in your home. Include the location of purchase records, deed, receipts for capital improvements, inventory of contents and property tax receipts.
Trust: Describe any trusts established for your child. Include the type of trust; the names, addresses and phone numbers of all trustee's including alternates, and the recent value of the trust(s).
Advisors: Name all advisors, such as lawyers, tax preparers, insurance agents or financial planners. List their addresses and phone numbers.
Other: Describe the location of your child's guardianship papers; school records; phone number of current case workers, if any; copies of birth certificate; Family Benefit Allowance forms; information about Family Benefit Allowance and other government benefits including most recent completed application forms.
By: Richard Fee, edited by The "Special Needs" Planning Group
A Will is a legally enforceable set of instructions that you leave to people you have chosen which tells them how to distribute your estate after you have died. A properly prepared Will can allow you to "Have It Your Way" when it comes time to distribute your assets. It must be created in a specified manner in order that it be considered to be a legal Will. When we have a family member with a disability, the Will often creates an Absolute Discretionary Trust (Henson Trust) which is designed to provide a pool of resources for the person with a disability without disqualifying him or her from receiving ODSP benefits. One of the key people in the Will is the Estate Trustee (formerly called the Executor). The Estate Trustee is often your spouse or another person (or institution) that you trust if your spouse has pre-deceased you. Often, alternate Estate Trustees are named to be act if your first choice has died or is unable to act on your behalf. Your Estate Trustee should be someone who has sound judgement, good business sense and can act impartially if there is a dispute between beneficiaries of your Will. In general, the Estate Trustee will be responsible for all aspects of the administration of your estate. This includes gathering and distributing your assets in accordance with the instructions contained in your Will. Some additional duties of an Estate Trustee are:
arrange and pay for the deceased person's funeral
routine matters like re-routing the deceased's mail, cancelling charge cards and magazine subscriptions, paying bills and debts
apply for CPP death benefits
gathering information regarding the beneficiaries named in the Will
gather and inventory the assets of the deceased
Probate the Will if necessary
prepare the tax returns of the deceased and the estate
distribute the residue of the estate in accordance with the Will
SETTLE THE HENSON TRUST CREATED IN THE WILL
Most valid Wills for families with sons or daughters with disabilities, in Ontario, contain several clauses.
These typical clauses are:
Date of the Will and full identification of the testator ( the person making the Will)
Revocation clause to cancel all previously created Wills
Appointment of the Estate Trustee (formerly the Executor)
Distribution of the estate property:
a) Specific Gifts
b) General Gifts
c) Division of residue
Residual Clause - indicating how to distribute items not specifically mentioned
Payment of Debts
Guardian for Minor Children
Creation of an Absolute Discretionary Henson Trust for your beneficiaries with a disability
Each of these clauses should be discussed and incorporated in your Will if they have relevance to your situation. It is recommended that you familiarize yourself with these clauses before entering into discussions with your lawyer to create your Will.
In most Provinces of Canada, people can write their own Wills and have it be considered legal. This type of Will is called a Holograph Will and it requires no witness to the signature. However, the Holograph Will must be completely written and signed in the person's own handwriting in order for it to be legal. This is often considered to be the easiest type of Will to create since it doesn't require a lawyer. However, the Holograph will should only be used in cases where there is a very simple estate to be distributed and where the Testator feels that he or she has enough information about the legal requirements of a Will to be comfortable in preparing one. This is seldom the case when dealing with planning for our sons or daughters with disabilities. The "Will Kits" that are offered via the radio and television media are somewhat similar to the Holograph Will. In the opinion of many lawyers in Ontario, the Will Kits are of very limited value to a family with a family member with a disability. They do not allow for the creation of an Absolute Discretionary Henson Trust and as such, would probably result in our children with disabilities being disqualified from receiving ODSP benefits. The old saying "penny wise and pound foolish" is very apt in these cases. The extra money spent when using the services of a Lawyer to create your Will is usually money well spent, particularly for families with a member with a disability.
The second type of Will is known as the Formal Will. This is usually a document that is prepared by a lawyer which contains the signature of the person making the Will and the signatures of two witnesses. The witnesses must in fact witness the signing of the document by the Testator ( the person making the Will) and each other. They must not be a person or the spouse of a person who will benefit under the terms of the Will. This type of Will provides the highest level of peace of mind. It ensures that your wishes will be carried out after your death and such a Formal Will is well worth the expense associated with its creation.
In conclusion, the Will is a very important tool that we make use of when planning our estates. It is particularly important when our plans include the well being of our sons and daughters with disabilities since it establishes the Henson Trust. More information relating to the Henson Trust is located in the Trust section of this web site.
The Ontario Federation for Cerebral Palsy contracted with Graeme Treeby, the founder of The "Special Needs" Planning Group to write the book on estate planning for families of people with disabilities. It is an in depth look at planning issues which commonly face families. Removing the Mystery explores such topics as Selecting an Estate Planning Professional, ODSP Benefits and Entitlements, Wills and Trusts, Henson Trusts, Trustee Selection and Duties, Planning Giving, Probate Fees and much more. It benefits all families regardless of the disability of their family member. It can be purchased from the OFCP via their web site at:
The Ontario Federation for Cerebral Palsy also contracted Graeme Treeby to write this manual. It guides trustees of a Henson Trust through the process of performing their duties in a step by step manner. Chapters include: Immediate Steps of a Trustee, ODSP, Financial Issues, Trustee Reporting. It too is available for purchase from the OFCP at:
Please e-mail us:
The "Special Needs" Planning Group
70 Ivy Crescent,
A Will is a legally enforceable set of instructions that you leave to people you have chosen which tells them how to distribute your estate after you have died. A properly prepared Will can allow you to "Have It Your Way" when it comes time to distribute your assets.