As most of you know raising a child with severe disabilities is costly and some times it's the simple joys, like a family vacation, the get put on the back burner because other expenses are more important. I have recently found out that there are TWO organizations that grant wishes to our special children, after all they have been through, all the hardships they face, this could be the door to that one special place that they have dreamed about since they were little.
The first one is The Sunshine Foundation, not only do they do individual wishes but they also do "DreamLifts" every year. DreamList are day trips to places like Disney World or West Edmonton Mall, they travel with about 80 kids and medically trained staff, these are independent trips -no mom or dad constantly over them- and are for the older kids (7-18yrs).
The criteria for individual wishes and DreamLifts are as follows
To receive an Individual Dream, a child must:
1. Have a severe physical disability or a life-threatening illness
2. Be between the age of three to 18th birthday and have at least the cognitive ability of a three-year-old
3. Live in Canada
4. Be able to formulate his or her Dream (this must be the Dream of the child) and communicate the Dream with or without technical assistance
5. Have not already received a Dream or wish from a similar organization (however, the child may have participated on a Sunshine DreamLift)
In addition, the Dream and its cost and safety are considered. For those reasons, Dreams we are unable to grant include trips to dangerous places, motor vehicles, boats, all terrain vehicles, shopping sprees, medical equipment and trips to seek medical aid or to attend medical conferences.
To qualify for a DreamLift, a child must:
1. Be between the age of seven and 18th birthday
2. Have a severe physical disability or a life-threatening illness
3. Be able to endure a very long day
4. Have the ability to communicate with or without technical assistance.
The second wish granting organization is Starligh Children's Foundation Canada, Starlight's Criteria is below.
Eligibility
In order to receive a wish from the Starlight Children’s Foundation a child must:
-Be referred between the ages of 4-18 (up to the child’s 19th birthday)
-Have a chronic, serious or high-risk life threatening medical condition
-Not have received a wish from any other wish granting organization in the past
Illness Guidelines
-If a child is an organ transplant recipient, the transplant must have occurred within the last year (exception: child is experiencing rejection or has other complications)
-Any Leukemia, Hodgkin’s and cancer patients who have been off treatment for two or more years are not eligible. (Time begins when the maintenance phase ends)
-If the child has cerebral palsy or Spina Bifida they must be dependant on a walker or a wheelchair.
-Trauma/sever injury cases are looked at on a case by case basis.
These are some of the illness guidelines, and do not represent our list in its’ entirety. For more information, or if you have a question on an illness please do not hesitate to contact us.
***The Starlight Foundation also has a program called Great Escapes, this program offers various activities for your family to do together outside of your home with other families in situations just like yours! These include outings to the movies, sporting events, cruises, and they have even went to the Great Wolf Lodge, ALL of the events are all inclusive! The tab is picked up by generous donors so families can spend time together, regroup, and go home feeling revitalized and hopefully with a little stress lifted off their shoulders.
I hope you find this information as useful as I did, I just happened to stumble across the wish granting parts and a speaker at my son's school pointed me in the direction of Starlights' Great Escapes program.
Friday, May 7, 2010
Sunday, March 7, 2010
Therapies and Specialized Day Cares and Schools
Therapies
Bloorview Kids Rehab
***You need a referral for services, do NOT make the same mistake we did, even though you will find the area for referrals and it says you need a referral from a doctor what it does not tell you or your doctor is they need to have a pediatric specialty to make most of the referrals! Ask for a referral to a Pediatrician and have them send it in.
Bloorview Kids Rehab assesses and treats children born with disabilities and special needs and those who acquire disabilities through serious illness or accidents. Children with complex disabilities access services at Bloorview on an inpatient or ambulatory basis according to their needs. Bloorview helps clients transition to adult services when they turn eighteen.
Bloorview offers inpatient, outpatient and day patient services in three main program groupings – Child Development, Community, and Rehab and Complex Continuing Care.
Contact
Cindy Ruelens, Intake/Discharge Coordinator
Tel: 416-753-6030
E-mail: cruelens@bloorview.ca
Ability Camp
Ability Camp offers an intensive training and rehabilitation program improving the lives and functional outcomes for preemies born with complications and children with brain injury or Cerebral Palsy as well as adults who have suffered a stroke or brain injury. Hyperbaric Oxygen Therapy combined with Conductive Education programs in a setting where families can stay together and support each other while having the ability to use the therapy equipment after the class is unique and families have traveled from all over the world to attend.
They offer specialized programs based on age groups to make therapy more fitting for those groups. They have Mom & Tots programs too meant for infants so you can start this therapy as early as you like as long as you can get the funds for it.
For more information and to receive a Free DVD call Kevin (Director)at 1-800-442-6992 or email to kevin@abilitycamp.com
Day Cares and Schools:
Silver Creek Preschool
Silver Creek provides a positive pre-school setting with therapeutic (physio, occupational, speech & language, and music therapy) services delivered within a caring and creative early education classroom.
We help children with and without physical and developmental challenges to achieve success as defined by each child and family.
We are dedicated to working with our families, the community and other professionals to ensure that the unique promise of each child is realized.
Silver Creek also has equipment specialists come into the school, they can fit AFOs and order walkers, wheelchairs or any other equipment your child is in need of. They fill out all the needed paperwork for ADP and Easter Seals, you just sign it and send it back, no more running all over the place to have all your child's needs met. They DO have a long waiting list, place your child on it ASAP, even a but before their second b-day. Our son was placed on their waiting list 10 months before he turned two and had a placement for hos birthday.
For more information about Silver Creek, or to visit, please contact us at:
Silver Creek Pre-School
65 Hartsdale Dr.
Toronto, ON
M9R 2S8
416-249-9770
Bloorview School Authority
Bloorview School Authority offers a unique setting for students in Junior Kindergarten to Grade One. The full day program is based on The Ontario Curriculum for Kindergarten and Grade One. Our approach is holistic and child-centred and based on the students’ individual strengths and needs. Our small classes allow for an academic focus on the acquisition of early literacy and numeracy skills to create the foundation for early learning. Library, music, visual arts, adapted physical education and aquatics enrich the weekly school timetable.
****Your child MUST be a client at Bloorview to enroll in their school, it is not guarantied that they will get a placement either, you MUST also enroll your child at their home school (your local school) because it is them who pick up the tab for sending your child there. This must be done ASAP, if they are accepted and your child is not registered at their home school yet you risk losing their placement! Also get the referral to Bloorview ASAP, you child MUST be seen by someone for one of their services BEFORE intake or your spot will be denied!
Bloorview School Authority
150 Kilgour Road
Toronto, Ontario, Canada
M4G 1R8
Tel: 416-424-3831
Fax: 416-425-2981
E-mail: school@bloorview.ca
Bloorview Kids Rehab
***You need a referral for services, do NOT make the same mistake we did, even though you will find the area for referrals and it says you need a referral from a doctor what it does not tell you or your doctor is they need to have a pediatric specialty to make most of the referrals! Ask for a referral to a Pediatrician and have them send it in.
Bloorview Kids Rehab assesses and treats children born with disabilities and special needs and those who acquire disabilities through serious illness or accidents. Children with complex disabilities access services at Bloorview on an inpatient or ambulatory basis according to their needs. Bloorview helps clients transition to adult services when they turn eighteen.
Bloorview offers inpatient, outpatient and day patient services in three main program groupings – Child Development, Community, and Rehab and Complex Continuing Care.
Contact
Cindy Ruelens, Intake/Discharge Coordinator
Tel: 416-753-6030
E-mail: cruelens@bloorview.ca
Ability Camp
Ability Camp offers an intensive training and rehabilitation program improving the lives and functional outcomes for preemies born with complications and children with brain injury or Cerebral Palsy as well as adults who have suffered a stroke or brain injury. Hyperbaric Oxygen Therapy combined with Conductive Education programs in a setting where families can stay together and support each other while having the ability to use the therapy equipment after the class is unique and families have traveled from all over the world to attend.
They offer specialized programs based on age groups to make therapy more fitting for those groups. They have Mom & Tots programs too meant for infants so you can start this therapy as early as you like as long as you can get the funds for it.
For more information and to receive a Free DVD call Kevin (Director)at 1-800-442-6992 or email to kevin@abilitycamp.com
Day Cares and Schools:
Silver Creek Preschool
Silver Creek provides a positive pre-school setting with therapeutic (physio, occupational, speech & language, and music therapy) services delivered within a caring and creative early education classroom.
We help children with and without physical and developmental challenges to achieve success as defined by each child and family.
We are dedicated to working with our families, the community and other professionals to ensure that the unique promise of each child is realized.
Silver Creek also has equipment specialists come into the school, they can fit AFOs and order walkers, wheelchairs or any other equipment your child is in need of. They fill out all the needed paperwork for ADP and Easter Seals, you just sign it and send it back, no more running all over the place to have all your child's needs met. They DO have a long waiting list, place your child on it ASAP, even a but before their second b-day. Our son was placed on their waiting list 10 months before he turned two and had a placement for hos birthday.
For more information about Silver Creek, or to visit, please contact us at:
Silver Creek Pre-School
65 Hartsdale Dr.
Toronto, ON
M9R 2S8
416-249-9770
Bloorview School Authority
Bloorview School Authority offers a unique setting for students in Junior Kindergarten to Grade One. The full day program is based on The Ontario Curriculum for Kindergarten and Grade One. Our approach is holistic and child-centred and based on the students’ individual strengths and needs. Our small classes allow for an academic focus on the acquisition of early literacy and numeracy skills to create the foundation for early learning. Library, music, visual arts, adapted physical education and aquatics enrich the weekly school timetable.
****Your child MUST be a client at Bloorview to enroll in their school, it is not guarantied that they will get a placement either, you MUST also enroll your child at their home school (your local school) because it is them who pick up the tab for sending your child there. This must be done ASAP, if they are accepted and your child is not registered at their home school yet you risk losing their placement! Also get the referral to Bloorview ASAP, you child MUST be seen by someone for one of their services BEFORE intake or your spot will be denied!
Bloorview School Authority
150 Kilgour Road
Toronto, Ontario, Canada
M4G 1R8
Tel: 416-424-3831
Fax: 416-425-2981
E-mail: school@bloorview.ca
Friday, August 14, 2009
Funding Help
There are many many programs out there, you just can't find them, most end up being found accidentally or by word of mouth from another parent who has utilized these programs.
President's Choice Children's Charity is one of them, I had never heard of them until I mentioned to my son's Occupational Therapist that we were having difficultly finding a good van (good gas mileage, not too expensive or old) to make wheelchair accessible. This program is wonderful but ONLY use it for very expensive items that no other charity or program will cover. For things like Vans they will provide the funding to buy one, and ADP (Adaptive Devices Program) covers to convert it to wheelchair accessible. For this program your combine income must be under $70,000.
Jennifer Ashleigh Children's Charity is another good program. We have used this program to help fund out son's special daycare, his daycare provides all his therapies under one roof in a daycare setting. You are not limited to a one time use, you can apply for funding if a need arises again. They are very fast at sending the forms, answering your question, and approving you for funding. We applied and had a response within 3 weeks saying funding was approved, you income needs to be under $60,000 a year for this program.
(under construction, more to come)
President's Choice Children's Charity is one of them, I had never heard of them until I mentioned to my son's Occupational Therapist that we were having difficultly finding a good van (good gas mileage, not too expensive or old) to make wheelchair accessible. This program is wonderful but ONLY use it for very expensive items that no other charity or program will cover. For things like Vans they will provide the funding to buy one, and ADP (Adaptive Devices Program) covers to convert it to wheelchair accessible. For this program your combine income must be under $70,000.
Jennifer Ashleigh Children's Charity is another good program. We have used this program to help fund out son's special daycare, his daycare provides all his therapies under one roof in a daycare setting. You are not limited to a one time use, you can apply for funding if a need arises again. They are very fast at sending the forms, answering your question, and approving you for funding. We applied and had a response within 3 weeks saying funding was approved, you income needs to be under $60,000 a year for this program.
(under construction, more to come)
Important programs parents should know about
After 6yrs of raising my first child, after numerous times of asking for help, it took one worker to inquire about WHY I wasn't taking advantage of resources before I found out about them. Not once did any of his doctors, nurses, or therapists mention any such programs to me, after finding out about them and bringing them up in clinics and asking why no one told me about them the only response I got was "we thought you knew". Yes, as a first time mother of a child with medical issues I was expected to know everything without being told.
I am not the first person this has happened to and I wont be the last! I was talking to a mother of a child with special needs last year, her son has had these needs since the day he was born, now at 10 years old I was the FIRST and ONLY person to tell her about these programs. With $10,000 now in their pocket from back payments I have not seen them without getting numerous thank yous.
(My first pay out was just as high, between the government readjusting my previous tax years and the back payments from the Child Disabled Benefit that gets added to your Canada Child Tax Benefit)
The first and in my opinion the most important thing you NEED TO DO when you find out your child has a disability is file for the Disability Tax Credit! (forms found here) This entitles you not only for a huge tax break but as soon as it's approved you will be entitled to the (Child Disability Benefit). Once you have applied and you have been accepted follow exactly what the letter tells you, to get them to back date to previous years you MUST ask them to do it. If it has been more than 5yrs since diagnosis you must tell them WHY you did not apply sooner, tell them these exact words "I WAS NOT INFORMED OF THE PROGRAM UNTIL "X" DATE". Now your amount back might not be as high as mine, this is because it is based on your tax returns.
The second program is just as important, even if you don't think you need it or qualify apply for it. This program is ACSD (Assistance For Children with Severe Disabilities) do NOT let the name fool you, your definition of "severely disabled" is nothing like their definition. I thought for sure we would not get it, my son was not "severe" in my eyes, but in theirs he was qualified as severely disabled. Find your local office and apply, do not fret over the paperwork, I could not for the life of me figure out how to put a price on some of my son's costs, but they have special workers that will come out and help you fill it out. Some offices don't even wait for you to ask or even give these papers to you (just the income form) they have the person automatically come out and do them with you. If for some reason they send you the forms phone them and ask for help filling them out, within a few days someone will come to your home and help you.
Special Services at home is another resource, but a warning to parents in the Toronto catchment area they are NOT APPROVING NEW APPLICATIONS! They are claiming they do not have the money, yet they gave themselves handsome raises, if you wish to read more on this please read the newsletter and if you wish join in on the action to correct this.
If you are in any other area they are a great resource, you can go to the following website and download the application and find your regional office to send it to. It is also worth noting ACSD will recommend that you apply for this program, they are the very few people who will tell you where to get additional resources.
I am not the first person this has happened to and I wont be the last! I was talking to a mother of a child with special needs last year, her son has had these needs since the day he was born, now at 10 years old I was the FIRST and ONLY person to tell her about these programs. With $10,000 now in their pocket from back payments I have not seen them without getting numerous thank yous.
(My first pay out was just as high, between the government readjusting my previous tax years and the back payments from the Child Disabled Benefit that gets added to your Canada Child Tax Benefit)
The first and in my opinion the most important thing you NEED TO DO when you find out your child has a disability is file for the Disability Tax Credit! (forms found here) This entitles you not only for a huge tax break but as soon as it's approved you will be entitled to the (Child Disability Benefit). Once you have applied and you have been accepted follow exactly what the letter tells you, to get them to back date to previous years you MUST ask them to do it. If it has been more than 5yrs since diagnosis you must tell them WHY you did not apply sooner, tell them these exact words "I WAS NOT INFORMED OF THE PROGRAM UNTIL "X" DATE". Now your amount back might not be as high as mine, this is because it is based on your tax returns.
The second program is just as important, even if you don't think you need it or qualify apply for it. This program is ACSD (Assistance For Children with Severe Disabilities) do NOT let the name fool you, your definition of "severely disabled" is nothing like their definition. I thought for sure we would not get it, my son was not "severe" in my eyes, but in theirs he was qualified as severely disabled. Find your local office and apply, do not fret over the paperwork, I could not for the life of me figure out how to put a price on some of my son's costs, but they have special workers that will come out and help you fill it out. Some offices don't even wait for you to ask or even give these papers to you (just the income form) they have the person automatically come out and do them with you. If for some reason they send you the forms phone them and ask for help filling them out, within a few days someone will come to your home and help you.
Special Services at home is another resource, but a warning to parents in the Toronto catchment area they are NOT APPROVING NEW APPLICATIONS! They are claiming they do not have the money, yet they gave themselves handsome raises, if you wish to read more on this please read the newsletter and if you wish join in on the action to correct this.
If you are in any other area they are a great resource, you can go to the following website and download the application and find your regional office to send it to. It is also worth noting ACSD will recommend that you apply for this program, they are the very few people who will tell you where to get additional resources.
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