1. 11 Planning for the Future
1.1. Planning... Just in Case (1 of 3)

By Leslie Broun, M.Ed., ASD and Education Consultant

“Let me live one day longer than my child, just one day.” (Parent of a child with ASD)

This series of tip sheets provides suggestions for practical plans and actions that can help ensure the safe and secure future of your child, of any age. The number of steps and the amount of work may seem overwhelming, but it’s important to begin the process and see it through, one step at a time. There is perhaps no other task that will give a parent more peace of mind.

Unfortunately, serious health and other crises that are immediately life-altering can happen at any time. In an instant, family structure and dynamics can change forever. Even if life remains free of major disasters, death is the one event that none of us can avoid. What you can do, however, is to take steps to lessen the impact of such events on your child with ASD. 

If you have not yet made plans for the future, you are not alone. In 2008, Easter Seals and the Mass Mutual Insurance Company conducted a survey of more than 2,500 parents of children who have ASD. When it came to planning for the future of a child with ASD on the death of one or both parents, the survey found:

Only 38% of families had designated a guardian.

Only 17% had created a trust.

Only 24% had identified preferences for future living arrangements.

Here are some steps you can take to protect your child’s future without you.

Find a lawyer who understands the documents and legal structures involved in protecting persons with disabilities. (You do not want to pay an inexperienced lawyer to gain this knowledge.)

Determine who you want to be the legal guardian(s) of your child (or children). This is a role that involves a great deal of responsibility: choosing a guardian will take time and involve many discussions about the process and expectations for the guardian. Ensure that a prospective guardian thoroughly understands the role before accepting it. Be aware that choosing a guardian (typically by naming them in your will) only gives that person temporary guardianship over a child under 18, and no automatic role at all in the care of a child over 18. For children under 18, a court process is required to make the arrangement permanent. For children over 18, who are considered adults regardless of their disability, other processes are involved. (See the separate tip sheet dealing with guardianship of those over 18.)

Write a will with the help of a lawyer, ensuring that it includes the types of provisions this tip sheet suggests, and have it notarized and registered.

Determine who should be the executor of your will (also referred to as the trustee of your estate). This may or may not be the same person who has agreed to be guardian. Again, be sure the person agrees to, as well as, understands this role: there are several publicly available documents that explain exactly what an executor does.

If your child receives, or will receive, social assistance such as ODSP (Ontario Disability Support Plan), their assets must be managed to make sure those benefits are not put at risk. If your child does not qualify for ODSP, you may still want to put measures in place to protect assets they inherit. This means you need to establish a trust. For an inheritance of under $100,000, a “Disability Expenses Trust” or “Inheritance Trust” where the money is considered an asset of your child but managed by someone else (a trustee) on their behalf should not affect social assistance benefits. In this type of trust, the child (beneficiary) can also be a trustee, if he or she is capable, so long as there is at least one additional trustee. For a larger inheritance, you need to establish a Henson Trust, a special kind of trust where the money is not considered an asset of your child (and so does not affect social assistance) but is managed at the “absolute” discretion of the trustee. Trusts can be established during your lifetime or based on directions in your will, and should be developed with legal advice. Regardless of the process, establishing any kind of trust means you need to decide who should be trustees. As for guardianship, this is a role that carries a lot of responsibility for the long-term well-being of your child. Expect to spend time and energy finding the people willing to take on this job, and be sure they understand their responsibilities.

While this may not be the best plan for everyone, you may consider establishing an insurance policy naming your estate as beneficiary, and then direct that the benefit go directly into a trust. Be sure you name your estate, and not your child, as beneficiary to protect social assistance benefits. Consult an insurance broker to see whether term or whole life insurance would be the wiser plan for you. Find out how soon the policy can be paid out and be sure that your executor knows the status of the policy and its worth.

If your child with ASD has siblings, don’t forget to make arrangements for them through insurance policies or trusts. Your neurotypical children, or their guardian on their behalf, will need financial support for their education and/or to cover the daily expenses of living until they are able to become independent.  

Open a Registered Disability Savings Plan (RDSP) for your child. This is a federal plan that allows you (and others) to set aside funds for the long-term financial security of your child. An RDSP will include generous government contributions and does not require any contributions from parents if their income is low.  Parents must assist in opening the account. The funds in RDSP’s are tax-free until withdrawal and do not affect your child’s social assistance benefits.  See http://rdsp.com/ or http://rdspontario.ca/

Make annual contributions (even small ones) to a Registered Retirement Savings Plan (RRSP), as these also can pay into the Henson Trust or RDSP.

If you are receiving a work-related pension, see if it has special inheritance provisions for a surviving child who has a disability.

See part 2 in the series for additional tasks you should perform.

 

Keywords: Guardian, Executor, Will, Henson Trust, Trustee, Estate, Financial Information, Future Planning, Parents

 

This document is for information purposes only and should not be considered a substitute for obtaining professional legal or financial advice. This information reflects the rules and regulations in effect in Ontario, Canada and may not apply in other provinces or countries.

 

 
 
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Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
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1.2. Planning... Preparing & Organizing Important Documents (2 of 3)

By Leslie Broun, M.Ed., ASD Consultant

As well as preparing the legal documents described in part 1 of this series, there are several other practical and important steps you can take to make it easier for the people responsible for tasks after your death to carry out their duties quickly and efficiently. Sharing information about your financial matters might make you feel uncomfortable: we usually think about our financial affairs as private.  However, to plan for life-altering experiences, you need to make sure that even private information is accessible to those who will need it.

Set up a box or binder to hold all the information someone would need if you were no longer able to provide it yourself. Keep the box or binder in a place that is safe but accessible by your family and your executor. Unless you have a home safe, you should keep original documents in a safety deposit box or other secure location, and identify that location in the box or binder.

Collect or create the following:

  • Instructions for what to do first in the event of crisis. This might also include a lawyer’s instructions for how to proceed.
  • Your will.
  • Information on prepaid funeral arrangements and funeral requests.
  • Copies of all family birth certificates and vaccination records.
  • Copies of all family passports.
  • Bank information for all your accounts, including bank name, address and account numbers. 
  • Note: It may be wise to have at least one bank account set up as a joint account with a trusted close relative, spouse, or friend so that funds remain easily accessible after your death (this is particularly important for single parents). Your executor will need immediate access to cash to settle any outstanding accounts and to support your survivors.
  • Credit card information so that these cards can be cancelled immediately.
  • E-mail accounts and passwords: this is particularly important if bills are paid on-line and through e-mail. Also, it may provide a list of people to be notified.
  • Insurance policies.
  • Records of outstanding debts.
  • Copies of all paperwork associated with any child support payments. In single parent families, if the custodial parent dies and children will not then be in the custody of a surviving parent, someone will need to re-apply for child support. This involves filling out forms and submitting them to the appropriate family court.
  • Pension information and specific information about benefits received through the workplace.
  • Tax returns for you and, if applicable, your child.
  • Contact information for your lawyer, accountant, and other advisors. 

Also include information about your child with ASD:

 

  • An up-to-date list of medications your child takes, including the dosage and when it is taken. This can be critical if your child is not able to manage his or her own care.
  • Information about how to provide comfort to your child. Include a list of the child’s preferred activities (including TV shows and movies) and foods, as well as information about sensory sensitivities, behavioural issues, and sleep patterns.
  • Detailed information about your child’s disability, including documents such as psychological and adaptive functioning assessments, medical reports and your child’s Individual Education Plan (IEP) or any transition or person-directed plan. Also include general information about ASD itself.
  • Names and contact information for your child’s doctors, as well as any specific medical concerns.
  • Information about the agencies, organizations, or programs your child accesses, the services and funding that they provide, and who to contact at each group. Include a copy of any documentation related to those services. For funding that must be applied for regularly (SSAH, Passport, etc.), include a sample of past funding applications as a model to follow for future applications.
  • If your child has not already been through the Developmental Services Ontario (DSO) process, include information about DSO (www.dsontario.ca), which is the entry point for services once your child turns 18. Discuss with the guardian how the structure of adult service delivery may affect the future of your child.

 

Once a year, meet with the people who will be instrumental in supporting your child, so you can discuss any changes to your situation. Be sure they know your hopes, dreams and wishes for your child’s future. At the same time, update the information listed above so it always stays current. As circumstances change, you should also review the terms of your will.

The ultimate goal is to ensure the future security of your child with ASD. In part 1, we discussed the creation of a will, a trust, and other financial planning. In this tip sheet, we outlined the most important documents and information that need to be made easily accessible. In the third tip sheet in this series, we deal with the role family, friends, and siblings can play in the future of your child with ASD.

 

Keywords: documents, medical records, financial information, future planning, parents, wills and guardianship


This document is for information purposes only and should not be considered a substitute for obtaining professional legal or financial advice. This information reflects the rules and regulations in effect in Ontario, Canada and may not apply in other provinces or countries.

 
 
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Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
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1.3. Planning...Roles of Friends, Family & Siblings (3 of 3)

By Leslie Broun M.Ed., ASD Consultant

Because family structures and dynamics differ from family to family, choosing who will be involved in the care and support of your child upon your death (or if you are no longer able to care for your child) is important, but different for different families.

Choosing those to involve as guardian, executor, and/or trustee is difficult. People need to be able to care for your child, supervise their living arrangements, manage their finances, advise on their medical care, oversee their community engagement, and always act in the best interests of the child. It is possible for one person to play all the roles, but that puts a lot of pressure and responsibility on just one person.

Because life is unpredictable, remember that you may need to change your list of involved people over the years: friends relocate, siblings marry, and other changes in life occur.

Parents often look to other family members to take responsibility for their children if the parents are no longer able to provide care. It’s best not to just assume that everyone will be ready and willing to carry out your wishes. You need to discuss the issues, reach some sort of agreement, and set out a planned financial structure for the ongoing care of your children, particularly the child (of any age) with ASD.

In the case of parents who are divorced, separated, or who are single parents with or without a partner, it is critical to discuss what would happen to your children and make a plan to which all parties can agree. If differences exist, they must be set aside in order to make decisions that are best for the children.  

Adult children may be called upon to make decisions about the life of their sibling with ASD. Again, do not just assume that this will be acceptable: discuss the siblings’ role openly and repeatedly over time. This is not something to be put on someone in a moment of tragedy, when siblings have suffered their own loss.

Here are some questions to help focus your thinking:

 

  • What are your expectations for your neurotypical children with regard to assuming responsibility for your child with ASD?
  • How old are your children? How old would a sibling have to be for you to think he or she would be ready to take responsibility?
  • Do the siblings have a good relationship? Does a sibling want to assume the role of caretaker or to take on financial and legal responsibility?
  • What are the professional aspirations of your neurotypical children? Would their lifestyles or educational pursuits be able to accommodate the responsibilities of supporting your child with ASD?
  • Have you talked to siblings about matters of finance, trust, and property?

 

It’s best to make sure that siblings grow up with the understanding and assurance that their own lives will not be negatively affected by their relationship with the child with ASD. Ensure that you have, as much as possible, made financial arrangements for your neurotypical children so that they can receive an education and be able to make a good start in life. If their life is progressing well, then they will be more able and willing to have an active role in making wise and effective decisions to support your child with ASD.

Looking Beyond the Family

In the absence of siblings or other family members, or if family would not be able to fulfill any of the necessary roles, you may need to look to friends or a professional such as a lawyer to assume the role of guardian, executor, and/or trustee.

Where no arrangements have been made, or if the designated persons are not able to fulfill their role, the Office of the Public Guardian and Trustee takes on responsibility. Take the time to research the role of this public office and perhaps make an appointment to discuss how the Office would carry out that responsibility for your child. For a list of offices in Ontario, visit: http://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/locations.asp.

You can find other information about the Office at: www.ontario.ca/en/communities/law - select Guardianship

The most important thing is to take the first step. Open the discussion. Make a plan. Avoiding the discomfort of the process now is not in your best interest, or the best interest of your family.

 

Keywords:  Guardian, Executor, Trustee, Siblings, Estate, Future Planning, Parents

This document is for information purposes only and should not be considered a substitute for obtaining professional legal or financial advice. This information reflects the rules and regulations in effect in Ontario, Canada and may not apply in other provinces or countries.

 

 

 
 
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Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
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1.4. Celebrating Another Housing Option for Adults with Disabilities
Dr. Kimberly Maich, Chair of the Education Committee, Autism Ontario, Brant Chapter
This article was originally published in Autism Matters, Fall, 2010
 
Years ago, when our family’s now 18-year-old son, Robert, was dually diagnosed with PDD-NOS and Bipolar Disorder, we came across a website with housing options that looked interesting, but immediately discarded as impossible for us! For one thing, we were concerned that our son—who was then struggling in residential care at London’s Child and Parent Resource Institute (CPRI) —would never be able to again live within our family unit; for another, I was apprehensive about the fit between this program and our city bylaws. Fast-forwarding to 2007, with the guidance of our realtor Karen Hobbs-Thomson of REMAX, my husband and I purchased a home with an “empty shell” in an outbuilding that was comprised of about 300 square feet, including a similarly tiny basement with full ceiling height. We purchased our home with the idea that this space could somehow be converted from its former use as the boiler room for commercial greenhouses, into a transitional living area that fit well with our prediction that our son would want some freedom by age 18—but not too much!
 
Immediately after purchasing our home, we began researching the options and checking out various possibilities that would align with our municipal regulations in the City of Brantford. After struggling for some time, we approached Brantford Housing, where Tom Hodgson enthusiastically reminded me of the Canadian Mortgage and Housing Corporation [CMHC] support for creative options in housing. Specifically, he kindly ordered and provided me with a copy of CMHC’s “Residential Rehabilitation Assistance Program [RRAP]: Secondary/Garden Suite” application package. Within RRAP, the use of a Secondary/Garden Suite is described as follows: “Canada Mortgage and Housing Corporation (CMHC) offers financial assistance for the creation of a Secondary or Garden Suite for a low-income senior or adult with a disability — making it possible for them to live independently in their community, close to family and friends” (CMHC, 2010, para. 1).
 
What is a Secondary Suite or a Garden Suite?
A secondary suite, sometimes called an in-law suite, is a self-contained separate unit within an existing home or an addition to a home. This means there are full kitchen and bath facilities as well as a separate entrance. A garden suite is a separate living unit that is not attached to the principal residence, but built on the same property. Garden suites are sometimes referred to as “granny flats” because they were originally created to provide a home for an aging parent of a homeowner. Like a secondary suite, a garden suite is a self-contained unit. Regardless of which type of housing is chosen, secondary and garden suites must meet all applicable building code requirements as well as local municipal planning and zoning regulations.
 
Who Can Apply? 
You may be eligible to receive assistance if: you are a homeowner or private entrepreneur owning residential property that would accommodate an affordable, self-contained rental unit for a low-income senior (65 years of age or more) or adult with a disability; your property meets with the applicable zoning and building requirements; you consent to enter into an Operating Agreement that establishes the rent that can be charged during the term of the Agreement; you also agree that the household income of the occupant(s) of the newly created self-contained unit will be below a CMHC set level. Adapted from CHMC (2010, para. 1-6).
 
Our next step was to work our city’s planning department to see what proactive steps needed to be taken prior to the approval of a permit for this forgivable loan, described in detail above.  During these lengthy and sometimes challenging processes, we were fortunate that our call for help came across the desk of Lucy Hives, a Senior Planner for the City of Brantford. Together, we researched various options, searched out paperwork, drawings, measurements and plans, and reached various conclusions. First, we applied for a zoning change to allow the development of a fully self-contained unit on our property’s outbuilding, currently zoned as a single-family dwelling space. Later, this option was discarded and we were requested to design and build a fully enclosed breezeway which would join our main house together with our outbuilding. This joining together, along with full interior access to the unit for our son, would then allow us to obtain permit approval. 
 
At this point, we were extremely privileged to have Rob Wilkie enter the scene, owner of Rob the Builder in Kitchener/Waterloo [robthebuilder@primus.ca]. Rob was able to take our vision and the city’s regulations and craft them into a plan that worked for all involved. With this breezeway fully excavated, built and finished with a series of shoe racks, coat hooks, and other storage devices to create delight in any mother—of a child with ASD or not—the second phase of constructing the living area could begin.
 
Years of planning went into several nail-biting weeks of preparing lengthy, detailed and precise responses to a range of questions, inquires and regulations put in place to support this CMHC program, as we prepared a package to be forwarded for approval. After several follow-up series of questions, answers and more documentation, we received the “go-ahead” letter! This was a day of celebration in our home! 
Together with the unwavering support and ready assistance of Anne De Rosse, also of the Housing Department in the City of Brantford, we successfully navigated the step-by-step process of construction, approvals, and the reimbursement process.  As of the time of this writing, we are awaiting only the last piece of the approval on the completion of our extended living space from the Fire Marshall, the Electrical Safety Authority, CMHC, and the City of Brantford. We have been proud to be a part of Brantford’s first use of this imaginative program. 
 
This is what Tom Hodgson, RRAP Agent, very kindly had to say about the process: 
It was so exciting to receive the inquiry from Kimberly Maich with respect to CMHC’s Secondary Suite program. I could tell after speaking with Kimberly for a short time that she was the perfect candidate for the program. The City of Brantford Housing Department had just recently taken over the administration of the program so we were thrilled about the possibility of seeing an application come to fruition. After visiting Kimberly and seeing the finished project it was obviously a resounding success. Kimberly’s son Robert will be able to live independently but will also be close enough to family and friends to receive necessary support. Thanks Kimberly for your patience, determination and unwavering positive attitude throughout the process. 
 
Consider CMHC’s programs as an option for your son or daughter who is not quite ready to face the world with complete independence, but is ready to spread their wings slightly in the sight of his or her parents. Here are a few pieces of advice from one experience:
  • Your work will be done on a very tight deadline—have your contractors ready, waiting and prepared for a quick turn-around. For example, Rob Wilkie, our dedicated builder, often slept in the living area itself while working [quietly] into the wee hours of the morning.
  • Be prepared to deal with many details and to gather and share information from a variety of sources. Be patient and persistent!
  • Photocopy everything you submit. Keep your information organized every step of the way. A clear proposal is a more readily accepted proposal. 
  • Don’t be afraid to use the courier for speedy delivery!
  • Ensure all your approvals are in place as soon as possible. Pay for your permit up front. Even though you may not be reimbursed for its cost, you will be prepared to start work as soon as your forgivable loan is approved. For example, when we received our approval letter, our work was to begin “immediately” and we were given a specific completion date.
  • Be certain that your contractors know that they will be waiting for reimbursement for their work and that the program does not include up-front costs.
  • Plan to have extra funds on hand for unexpected costs, as well as preparation costs. For example, prior to applying for this program, we paid close to $20,000 to waterproof the basement area and to build the breezeway required by municipal regulations. 
  • Keep in mind that you have a responsibility to maintain CMHC standards for a long period of time to fulfill the requirements for loan reimbursement. 
  • Finally, celebrate this program, an exceptional option for our grown sons and daughters with ASD or other disabilities.
Author’s Note: Various friends and family members kept kindly inquiring, “Is Robert excited?” I typically responded, “Not nearly as excited as we are!” However, I think we finally had his approval for the project when he staggered into his new living space shortly after the inspectors left, burdened down by a modest television set purchased with care by money he saved for 15 years for an important event. He brought his very own television to the basement and sat on his very own reclaimed couch, and sighed. I interpret this as a sigh of contentment and happiness! 
 
Many thanks to Boyle’s Plumbing and Heating of Brantford, for their steady support, careful planning, and well-timed work completion [boyleplumbheat@lincsat.com]. 
Photos provided by Michelle Barr, Master of Education student at Brock University and Autism Specialist at McMaster Children’s Hospital’s Autism Spectrum Disorder School Support Program.
 
References
Canadian Mortgage and Housing Corporation (2010). Residential Rehabilitation Assistance Program for Persons with Disabilities (RRAP — Disabilities) Retrieved on 24 August 2010 from http://www.cmhc-schl.gc.ca/en/co/prfinas/prfinas_003.cfmhttp://www.cmhc-schl.gc.ca/en/co/prfinas/prfinas_003.cfm
 
Keywords: Adults; Adolescents; Future planning; Parents; Housing
 
 
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Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
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