Sra Report 1
Sra Report 1
Sra Report 1
SRA was formed in 2006 by a small group of parents who were interested in finding a
housing alternative for our adult children. We spent a couple of years investigating
everything we could learn and forming possible partnerships with various families. The
original 6 families moved their children into their own homes in 2009. Out of the 6
families 4 of them are in the original homes, one individual from each house moved out
at the end of the first year due to the families and the individual not working out. Those
two families have since moved into another situation with new roommates. One house
has had the same 3 roommates for 2 years now. The other house has had difficulty
finding the right 3rd roommate and family partnership. This is the hardest part of the
whole thing, finding the right roommates and getting families to give it a try.
The two original homes have LIGHTS funding. One of the roommates who moved out,
has permanent funding and another member has permanent housing as well. He is
currently looking for a new roommate.
There are now around 128 families involved in SRA. There are a few new partnerships
in the works, others are not quite ready yet.
We have started a provincial network and continue to outreach to various family groups
who are looking into alternatives. I believe this is the best way to organize families and
groups. We can learn from each other. Those who have been successful can help those
who are just starting and give families the benefit of what they have learned. This is not a
one size fits all, every house (as in life) is different, as it should be.
All this has been done by families and their adult children. It has been done without
government funding. It has been done because some families want something better for
their children. It is not for all, as everyone deserves to have choices in how they live and
who they live with. We as a group are not willing to wait for the government to decide
what it is we want, we as a group are determined to make this work (as what choice do
we have), we are doing this before we are too old and tired, we are doing this because we
love our children and want the best for them. We are doing this because we are tired of
waiting for nothing!
food
clothing, and
other necessary personal items.
The amount you receive for the shelter allowance is based on:
your actual shelter costs up to a maximum depending on the number of people in your
family
you live with your parents and they buy and prepare food for you, or
your landlord buys and prepares food for you.
Passport Funding
http://www.mcss.gov.on.ca/documents/en/mcss/publications/developmental/passport/passp
ort_guidelines_en.pdf This is the link to the most recent passport guidelines
This is a provincial funding program.
Passport is a program that helps adults with a developmental disability to participate in their
communities. It also helps caregivers of an adult with a developmental disability take a break
from their caregiving responsibilities.
Passport can provide supports and services to adults with a developmental disability so they can:
Passport funding can also be used to hire a support person to help the individual with a
developmental disability, in order to give their main caregiver time to look after other personal or
household needs
LIGHTS ( a Toronto initiative) will support families seeking housing opportunities in four
ways:
1. Assisting families in determining how they can create and operate a home (shared with
others) for their intellectually disabled family member. These homes will be managed by
the families involved, with LIGHTS as a supportive partner.
2. Connecting families seeking similar residential options. Families will be part of an online
network that will help them identify and secure potential roommates, coordinate staffing,
and provide and share information and knowledge around government funding programs.
3. Building capacity for this critical housing sector by securing in-kind, tax-deductible
donations of real estate and by advising families of other real estate options which will
add to the number of homes available for these families.
4. Providing temporary, interim funding to families who cannot afford the start-up process,
with the goal of bridging early cash flow needs while families seek additional resources,
including government funding, to assume these costs.
STAFFING
There are many methods of having staff. Again go to your philosophy statement and it will guide
you to your answers.
#1 Priority
Always remember Staff is staff. Period! They are being paid to do a job by supporting your
child. They are not your childs friend, mother/father, dictator, or worse people who take care
of your child.
Staff are there to support the individual and facilitate the goals of the people they work for.
#2
Do you want to manage many people to cover the hours that are needed? The more staff, the
more organization is needed to schedule people, keep track of hours, making payments and
ensuring everyone is on the same page.
For example If you need 24/7 support because the person is home all day, then you need 3 shifts
per day. If you have different people for every shift then that would be 3 shifts per day x 7 days =
21 people to coordinate, maintain hours worked and when worked, as an asleep overnight shift is
a flat rate of $75 per night (on average), whereas the other shifts are paid on an hourly basis. This
would be the most expensive way to have support staff.
#3
Live in Staff: This is the cheapest method if you use room and board as part of the
payment. While the individual lives in the home 24/7, they are not working 24/7. Make sure both
you(parent)/individual and the staff person have clear expectations of what the work period is,
what are the living conditions for the staff person and the individuals who live in the home.
http://www.mcss.gov.on.ca/documents/en/mcss/publications/developmental/HiringSupportWork
er.pdf
This link will give you a guide to hiring a support worker. It was developed through a
partnership with the Ontario government. It has a lot of good ideas and links to various
government websites.
Planning
Think about your (and your childs) philosophy of how you/your child want to live, your guiding
goal. Once you know this very basic statement the rest is easy. For example, the guiding goal for
Jenny is I want Jenny to live an ordinary life. Every time I have a hard time with a decision, it
is because it goes against this philosophy.
Put a time line to your plan When do I want my child to live on their own? taking into
account this does take work, and adjustments, and planning.
WILL YOU HAVE THE ENERGY AT 80?
WILL MY CHILD BE ABLE TO ACCEPT THE CHANGES AT 60?
DO I WANT TO LIVE MY ENTIRE LIFE BEING A CAREGIVER?
DOES MY CHILD WANT TO SPEND THEIR ENTIRE LIFE BEING CARED FOR?
WHAT ARE THE BENEFITS TO LIVING APART?
WHAT ARE THE BENEFITS TO LIVING TOGETHER?
Planning
http://www.mcss.gov.on.ca/documents/en/mcss/publications/developmental/PlanningGuidePlain
LanguageMCSS.pdf
http://www.mcss.gov.on.ca/documents/en/mcss/publications/developmental/GuideonPersondirec
tedPlanningFinal.pdf
Person Direct Planning
Various agencies around the province can do the PDP (person directed planning) for free. You
have to request it through your local DSO (Developmental Services Ontario).
Or you can use an independent planner and use a portion of your passport funds to pay for the
planning
People can use a portion of their Passport funding for person-directed planning.
It helps people with a developmental disability prepare life plans that lay out
their distinct needs and goals. These plans can help them make the most out of
funding and outline ways they can participate in community activities.
The planning process helps others understand the individuals needs. It also
helps the person achieve their goals.
Use the template above to look at where you are now. This can be the start of your planning. A
good time to start this is around 18 years old. It takes a while to get the idea of having your child
move out and start their own life without you 24/7 plausible. It also takes time for your child to
realize they can do things on their own, establish a life outside of family and enjoy adulthood.
Everyone deserves a life of their own, make their own mistakes, learn to make their own
decisions and the consequences of those decisions. Parents deserve a life without their children,
do the things they planned on doing in their retirement and stop being the primary caregivers.
This doesnt change just because your child has a diagnosis, in fact I would say its almost more
important when there is a diagnosis.
The story that inspired my change of thinking:
When Jenny was around 16 years old, I read this article in the Toronto Star.
A husband and wife were driving in their car one day in the winter. It was a snowy, icy day. The
couple was in their 80s. They had a car accident and both of them died. The couple was on their
way to pick up their 58 year old son at his day program. The son waited for his parents to pick
him up for a long time, no one knew what had happened at the day program. The couple was
always on time. Eventually the day program tried to get in touch with the parents, but of course
where not successfully.
The police were called because the staff at the day program knew something was wrong, but
didnt have anyone else to call. The man was determined not to leave, because his parents always
came to pick him up. He was taken to the hospital, restrained and was kept there until finally the
news came of his parents.
That mans life went from normal to insane in a flash. He had lived in the same home all his life,
he had been taken care of all his life, he had no friends, there was no plan for him in place (even
though his parents where in their 80s. The one brother he had lived in another city and couldnt
take him.
Unfortunately I dont know the end of the story as it was never followed in the paper.
I looked over the paper at my daughter and started to cry. In that moment I decided I would
never do that to her. While I am sure those parents thought they were doing the best for their son,
and that when they died someone would look after him, they just didnt know who. I am sure,
because I have to think that someone took care of him, that the man was placed in a home, with
people he didnt know, with routines and changes that he might not like and had no control over
his life and didnt know how to look after himself or have anyone he could talk to about how he
felt.
In that moment, the search to find an alternative to my daughter living with me and being total
dependent on me was born. The idea of living in a group home never appealed to me, but I
thought I should investigate this option, as quite frankly is seemed like the only option. As with
life nothing is immediate, and it took a couple of years to get things going, but in 2006
Scarborough Residential Alternatives was created with the idea that we would spend a couple of
years searching all venues, all possibilities and get something figured out so that Jenny would
have a home of her own.
It took closer to 3 years to figure some of it out, have her move into her home, roommates we
hoped would work and a live in support staff. While I have never figured that that was that, we
were done, everything would remain the same for the rest of her life, I had hoped it would be
fairly stable for longer than it did. My own panic about Jenny being on her own almost won,
and I was seriously thinking of not doing it, paying rent for a year on the place we had rented and
just giving up, but I remembered what had driven me to this point. The couple in their 80s and
she moved in over a period of time. After 3 months the support staff left, and within 6 months we
knew one of the roommates was not working out. At this point, my determination to make this
work no matter what, kept me going. But the biggest reason was Jenny. She had taken to living
in her own home like a duck to water, she flourished. It is now no longer my decision, she was
not coming to moms home to live.
Five years later, she has become an amazing woman still living in her own home. Have we
figured everything out yet. NOPE! Life is a work in progress, but I know we did the right thing, I
know it will work and when something does happen to me, her life will not be thrown into
complete chaos.
The Budget
Actual
Variance
Income
$
479.00
$
479.00
619.00
619.00
Passport
<Other Income>
Total Income
$
1,098.00
$
1,098.00
Expenses
Fixed Costs
Mortgage / Rent Expense
Insurance - Homeowner's
Insurance - Life
hydro
Telephone Expense
Internet Expense
Heating
Pet Supplies
Medical / Healthcare
Personal Care
Clothing
Spending
Support Costs
Monday to Friday Day activities
Saturday and Sunday Activities
Evening Activities
Other
<Other Highly Variable Costs>
Total Highly Variable Costs
$
-
Total
Expenses
$
-
Net Income
$
1,098.00
$
1,098.00
The Budget
The budget can be daunting but it is a necessary tool for planning your childs move into their
own place. I have divided it into 4 sections the income, the fixed expenses, the variable
expenses and the cost of support staff.
The Income
This is divided as well. ODSP is actually given in two parts- the Shelter portion, which is a
variable amount and the basics needs amount this is a standard amount for everyone. It has just
increased to $619.00 per month. The Shelter portion is based on the amount the individual pays
for rent or room and board. The room and board amount is the lessor of the two and is based on
the individual having his/her food included in the shelter expense. If an individual rents, it is
based on the actual rent to a maximum of $479.00 per month.
ODSP is not for support staff or day activities.
Passport Funding is for day activities, respite, daily living etc. This has changed recently, so
make sure you read the latest Passport guide.
http://www.mcss.gov.on.ca/documents/en/mcss/publications/developmental/passport_2011/Pass
port%20Guidelines_en.pdf
If the individual has a paying job, this needs to be included as well.
This makes up the total income. You now know how much you have to spend per month.
Now we come to expenses. This is where you really need to think about just how much is spent
every month.
The Fixed Expenses
These are the expenses that are the same every month and are usually a yearly contract.
The mortgage or rent; depends on whether you own or rent. This is the same every month.
Insurance Home: Again this is the same amount every month and is needed if you own or rent.
Even renters need home insurance to cover contents and has a liability portion that is important
as there is higher staff activity in our childrens homes.
Insurance Life: This can be an optional expense that is the same every month.
There is space for other fixed expenses if your child has them. This is something that is the same
cost every month for a least a year.
Variable Expenses
These are the expenses that can change every month. Many apartments now charge for hydro
based on what you use. This is usually charged every other month.
The phone, internet and cable can be the same every month, but depending on what the
individual does could be different. So that is why it is a variable.
Food this includes eating out. This can change as most people shop every week. It depends on
whether you include cleaners, toilet paper, paper towel, laundry detergent, toothpaste etc. If its
not included here, then you do need another line in the variable expenses.
Medical/Healthcare includes all the things that are not covered by the drug card. For example
vitamins, cough/cold medications, pain medication (non-prescription) etc.
Clothing can be a big expense for some individuals. Some people are just unusually hard on
clothing.
Dont forget some spending money. Everyone needs some pocket money for the times they are
out and want a drink etc. Nothing worse than being with a group and you have to sit and watch
them have a drink because you dont have any money.
Support Costs
This has to be kept separate from the cost of housing.
This is divided up into various times of the day and weekdays and weekends. This is also where
you have more options as to costs. For example many people in all times of situations have their
children come back to their parents home for the weekend. This can save several hundred
dollars a month. There are many different options here and configurations for the weekend.
During the week, many individuals go to a regular day program everyday. This is a fix amount
of money per month. Some individuals do different things everyday, some volunteer, some are at
home and are ok during the day by themselves. So this figure is also a place where some savings
can be had.
Staff at the home. Again depending on how you staff your home for the needs of the individual,
this figure can vary greatly. It is usually more expensive in the beginning as individuals are
learning new skills, learning to live with people who are not family and most parents dont know
the capabilities of their children when they live at home. (This is not unique to individuals with
special needs). It also depends on how you staff the home. Live-in models are cheaper.
After you add up all the expenses and pass out from the shock, wait until you have recovered and
subtract the amount from the income. This is the amount you are kicking in for your children.
Again after you pass out and realize why you have no money, you have two options give up
and declare it impossible or try to figure out how to reduce expenses or increase income or
maybe a little of both.
This is when planning can begin. Either decision has its consequences and needs to be planned
for. Remember no matter what you do, at some point your child will live in another home. It can
be planned for and done in a way that your child is prepared to move into their own home over a
period of time or it can be done during a period of crisis, without any warning and without
family support. The choice is yours.
Pros
All decisions are made by the individual and their family. Everything is done the way the
individual wants and there is no need to compromise or consider other peoples needs. The
individual does not need to learn how to live with other people. The family does not have to
work with other families. The individual likes to be alone.
Cons
Individual can become very isolated and lonely. It can be expensive as all the costs have to be
paid by the individual.
Roommates:
Roommates can be a blessing or a curse. All parties need to have realistic ideas about how things
will be. The individuals can be great roommates, but not necessarily great friends or want to
spend time with each other outside of the home. Just because you are someones roommate
doesnt mean you need to be attached at the hip.
Sometimes things just dont work out, then the conversation needs to start about who will move
out, how to end it. This doesnt mean it should never be done again. If possible the one who
moves out should move into a new situation, rather than their parents home. Its life, not
everything will work.
Your child may live with someone for a while (could be a couple of years ) and then decide they
want to live on their own, have their own space. Your child is maturing this is not a bad thing.
Unfortunately if the individual cant afford to live on their own, then some creative thinking
needs to be done. Taking a look at the situation, see if the space can be divided or changed so
that the costs remain fairly similar and affordable.
Pros
Individuals have to learn how to get along with non- family members. They have to learn to
speak up for themselves in a respectful way. They have people around them.
They share expenses and workers (at times).
Cons
Families have to be able to work together for the good of all. Individuals have to learn to get
along. A place should be found so that everyone has their own room.
How will groceries be done? Will it be done by the parents, individuals or the staff? How will it
be paid?
How will other bills be paid? split equally
Individuals responsible for different bills
Internet banking
Credit cards
Larger purchases: who decides what is bought, paid, whose name is on the item. Remember they
may not always live together.
What happens when one leaves? This should be discussed right at the beginning and put in
writing. Sometimes things dont end well and this is not the time to discuss who stays and who
leaves, who gets the coffee pot both paid for, etc.
Conflict resolution
What do you do when neither is willing to compromise? When an agreement cant be reached?
If possible bring in a third party who doesnt have anything to do with the situation, who is not a
friend of either person. It could be someone that does this for a living and charges a fee, it could
be an agency worker that is involved or a neighbour. If the individuals get along well, but certain
fundamentals cant be agreed on, an outside person to help the families make a compromise is
well worth it.
Philosophy of living?
1.-ordinary everyday life your child/individual lives a regular life, with all the ups and downs
that involves, they make decisions and live with the consequences, they have responsibilities and
chores, they have friends over,
2.-need to be taken care of, looked after lots of support is required, generally instructed on
what to do, someone does things for them, dont make decisions therefore no consequences, no
responsibilities and someone cleans up after them, rarely have friends, usually surrounded by
staff. Under a false sense of safety
-responsibilities -
-routine based- does the individual like things to be predictable, do they like to do things on the
same day, meals at fairly regular time. Schedules are a great visual to help everyone keep on
track.
-individual oriented- it is a home, there is no area for staff (example an office for the staff,
individuals are not allowed in), instructions for the staff in plain sight. There isnt incidence
reports binders, If you wouldnt find it in your own home, you wont find it here.
-staff oriented- the house is set up for staff. The people who live in the house have little or no say
in what happens, how to do things, where and when they can go places as it depends on shift
chances and what the staff wants to do. The average home is not run in this fashion.
-contracts- some people like to have contracts between families that lay out what happens if
certain things occur, some people like to make contracts between the individuals, some like to
have contracts with the staff, It is totally individual.
The Future
The ultimate question every parent has Who will take over, when Im gone?
Self-Directed Support Organization: Corporate Structures for Housing Options
Self-Directed Support Groups (SDSOs) are increasingly becoming a valuable tool for the families
of persons with disabilities. These structures can be effective in creating opportunities to overcome
the challenges families face with daily supports for individuals with special needs.
what are SDSOs;
how to incorporate an SDSO;
the role of SDSOs in administering individualized government funding;
the role of SDSOs in hiring and managing the employment of personal support workers and
other staff and volunteers;
corporate governance issues for board members and officers of SDSOs;
the opportunities that SDSOs create for establishing residential and housing arrangements;
integrating SDSOs with other aspects of your estate and financial plan including your will,
testamentary trusts, housing trusts and registered plans.
http://www.witig.org/wstidata/resources/microboard-toolkit-vol-2f-wlinks_1413827213.pdf
The SDSO is a possibility, another possibility is partnering with an agency to do the
administration work of course there will be a fee for this. I am sure others have thought of
different ideas that work for their family.
There is no right answer for any of this, as each situation will be different it will require
different tweaks to make the situation work for your family. The important point of this guide is
that you do something, ensure your child has a life of their own and that you as parents have a
life separate from your children.