Resources

The Process

You may call us and inquire about our services, programs, general questions or for funding assistance.

During your first phone call, we ask that you inform us of your unique situation and why you think we can help you. We are interested in helping you and your family break down those barriers and we have your best interest at heart.

We will offer you membership and send the appropriate forms; membership is needed for funding requests

Funding

• We want your case to be strong to present to our partners, the charitable funders, so please tell us any information that you believe will help your case. An example would be whether or not you’re on the At Home program and why or why not. It is very important that you fill out every section of the forms we send you. Make sure that you write down as much as possible what you do with your disposable income, which is more complex than your T4. The reason we need to know this information is based on charitable priority of families in need. We need to show the charitable funders the extent of your extra costs, as opposed to a typical family.
• Sending a photo of your family, or your child is always a great way to strengthen your application and is necessary with some funders.
• You will need to realize that this application process takes time. We need to review your application, then schedule time to meet with the funders, and then let them review the application, etc. So please plan ahead, knowing that this process will take some time. You must also note that we have limited funding in a fiscal year and that we don’t often fund on our own because of limited financial support.
• During the waiting period, we will have a follow up call to understand the bigger picture of your situation. Please share with us what could help you and your child to be more included in the community, what barriers you need to overcome and how we can help you other than funding.
• Once our portion of the funding is secured, payment is made to the supplier. Money is not given to the family and retroactive funding is not funded.
• We appreciate it when you keep in touch; we care and love to see you be successful. We would like to know what difference this item has made on your family. Child and family feedback is a powerful thing, and having these stories of courage is an inspiring tool to help other families recognize that there are options out there.
• Once the equipment is no longer needed, we expect that you recycle it and give it to another family in need. We can pick up and transport most items.
• We are not just a one time use organization; you may come to us with multiple requests.

Issues

In today’s system, there are many “horror” stories that people unaware of disability issues will refuse to believe are true. The reality is, the system forces families down an exhausting path. The issues that many families face while trying to advocate for their child are usually similar.

Our family and system pages give an outline of what families in this situation can expect to encounter.

Effects on a family may be severe

Families with a child with a disability will face different issues than a family with a typical developing child.

• Downward spiral of poverty – A disability multiplies living costs until they are 8 times that of a typical family. Families are often forced to choose between food and therapy. Even worse, parents are at risk of losing their jobs because of the frequent emergencies and distractions at work, or because the child needs to be home-schooled. Even if funding is available, it often falls short of meeting the family’s needs. A startling example is speech therapy: as major funders recognize its importance and begin to fund families for it, the price of speech therapy doubled, still leaving families in poverty.
• Family Break Up – Divorce is common due to a combination of stress and limited time to nurture the marriage. Parents often have to choose between allocating time to care for the disabled child and for siblings. Grief and financial pressure can produce many terrible results. If the family is in poverty, they may start thinking about putting their child in foster care. Foster care is funded, and children with disabilities will get 4 times more money when outside of the original family structure.
• Stigmatization – Stigmatization means isolation out of ignorance. Stigmatization by community sometimes limits the ability of families to access help, such as for immigrant and refugee families. Stigmatization may even come from loved ones such as family members and friends.
• Health Risk – Strained by poverty, families are more likely to take jobs with higher risk for higher pay. Without the proper equipment, the parents might attempt to transfer the child and become injured or disabled themselves. Stress from financial/health/stigmatization issues could even cause hidden health problems. Family members may also fall into substance abuse because of the different stressors combined.
• Quality of Life – It is important to consider life outside the medical model. A strictly medical approach will not work, there needs to be a practical, holistic approach to full participation. Children should not be defined by their disability.
• Life with a Disability – Self esteem may take a hit when others discriminate, and make assumptions. For example, it is often assumed that if there is one visible disability, there may be others; often people assume additional intellectual disabilities.
• Disability affects the whole family – Siblings may act out because of decreased attention, feel jealous or neglected, or may assume responsibilities past their age level. The child with disabilities’ needs might overshadow the sibling and their successes, siblings will mature faster, their expectations for themselves grow larger or smaller, may feel guilt, anger, depression or are teased by other children.
• Sometimes, a supported school environment is difficult to find – as teachers may not be adequately trained to deal with challenged children or the attitudes of others interfere with learning and social development.

Ministry’s Definition of Disabled

It is assumed that the government takes care of people with disabilities; however the reality is 80% end up needing to go to charities because they are excluded by narrow eligibility requirements. For example, one can be determined not “disabled enough” because of a technicality, such as having an IQ over 70 or a disability that develops over time, not apparent at birth.

Disability status is judged according to a low degree of functioning or IQ. Disability can mean different things to different people. Children in power chairs do not have the freedom of mobility; the majority of people would assume the child would be funded while in reality the child may not be disabled enough according to the eligibility requirements. Failure to get a yes in assessment of eligibility means the family will not be able to access resources.

Currently, disability status is not permanent, meaning the complicated and long application processes will need to be repeated along with the stress and anxiety.

It is assumed that once a child turns 18, the disability is suddenly cured. After the funding ends, the young adult is then expected to generate their own income. But it may be difficult to work when personal disability supports aren’t even funded by the government. It will be hard to work if you don’t have the equipment to make it possible.

The public systems for disability resources

Families struggle with an unsympathetic system. There is enough to deal with when you have a child with a disability. On top of dealing with the everyday hardships, there are the complicated application processes, advocating, attempting to locate the different pockets of money you deserve unaided, and navigating the medical maze

Many unnecessary stressors are inflicted on these families: confusion with departments and different ministries, and waitlists, and a definition of disability which excludes rather than helps.

Resources for children are drastically reduced in one area of transition. Responsibilities for therapies transfer to the Ministry of Education upon entering school from the Ministry of Child and Family Development. A child is lucky if they receive adequate therapy in school. The average is one session a month, which is far less than it should be for successful child development.

Waitlists

Waitlists are impossible to evade in the current system. You may be on a waitlist for crucial developmental years in the 0-6 funding period, only to miss that segment of programs and be waitlisted again for school-aged therapy. During this time, disabilities may progress and irreversible effects may have already developed. An example could be the Early Intensive Behavioural Intervention Program – if you are waitlisted and your services are postponed, it defeats the purpose of Early and Intervention.

Funding

The majority of the funding that is available is intended for severely disabled children.

The At-Home Program is the main source of funding for eligible families with children with disabilities financed by the Ministry of Child and Family Development. The eligibility requirements are irrational – to get EITHER medical or respite, the child would need to be dependent in 3 out of 4 areas of daily living (being able to feed, toilet, wash and dress yourself). To get both types of funding, a child must be fully dependent in all areas. Even one or two of these requirements, on their own, are straining. If the child gets 3 out of 4, the parents then need to go through the difficult decision of choosing medical, (which would be addressed towards the child’s health), or respite, (which is addressed for the parent’s health).

Equipment for basic mobility and safety are more likely to be funded by the At Home program, yet may be funded for only a percentage of the full cost. Specialized Equipment costs are incredibly high ($6,000 for a wheelchair track) and often times the family never has enough money of their own to make use of this funding.

Funders may fund services, but not capital, in effect, disqualifying physical needs outside of acute care. You may be completely cared for when you’re in a hospital, but what about when you walk past their front steps?

For the people who do get the limited funding there is, some essential items aren’t even funded, such as leg braces, communication devices, standers, and positioning devices. These items are considered by the government as “one time use”, or “capital” which means they won’t be funded; even though these items are very important.

There shouldn’t be any reason for a family to be pushed into poverty enough to need to give their child into foster care because they would get 4 times as much funding there. There should be adequate funding available while in the family to avoid unnecessary breakdown.

Projects

Current

• We are beginning a systemic measure of gaps in participation – we welcome people to talk about their needs in participation and we recognize how important involvement in community is. There is a definite need for this information, and this survey needs to be done to truly represent the voice of disability. We will be incorporating the International Classification of Functioning for a quantitative measurement of how participation looks. This information will be used to better target programs to the true need of children.
• We will soon be partnering with UBC’s department of Occupational Therapy and have developed a fun, multi-sensory room with different types of equipment and toys. Parents can have the option to be engaged in floor time activities, access peer support and knowledge, take a break, or work quietly, knowing the child is having fun and taken care of. This room is meant to create an environment that works with a smaller group; it works for you and around your needs. If your child needs extra support, it is available here. This project begins in October 2009.

Emerging

• Emergency Infant Needs – We have been accepting donations of items regarding infant care to pass on to a family who might need these items in an emergency.
• Specialty mismatched shoes – 60% of the population have different sized feet, most of it less than one shoe size. When the difference is more than a shoe size, you may need to buy two pairs of shoes, doubling the cost. This different in size may be because of a disability or other reason. We are working on matching people with similar shoe sizes and tastes, or facilitating an area where the extra shoes will not go to waste.
• Anti-Oppression – An anti-oppression pilot project in the context of disability and mental wellness. 1 in 10 people experience bullying, a significant more amount of people with disabilities get bullied. For example – 94% of children with ASD between the ages of 13 and 18 are bullied.
• Accessibility Survey – An emerging area of interest is the development of a survey around accessibility. This survey can be used to test yourself and your company to see how inaccessible the area really is, accessibility is more than just a handicapped parking spot.

Past

• We have worked with Surrey Recreation to develop a program for girls with disabilities. The girls will are able to socialize with other girls with disabilities and do fun activities each time they meet. There is a large need for similar community programs, but unfortunately the project is not, at the time of writing, available, but we are interested to hear feedback from the community regarding similar programs.
• We have a library of over 400 books and resources for families to use. The items are available on-site and we are in the process of creating a search-able system online.