Parents Speak Out About Raising Children with Disabilities

As parents of children with disabilities, do you ever feel like you are continually fighting an uphill battle of unique challenges to face and barriers to overcome? You’re not alone. The 2006 Participation and Activity Limitation Survey (PALS) takes a new look into parents of children with disabilities in Canada and the daily aspects of their lives affected by caring for their child.

The PALS survey was taken shortly after the 2006 census and was sponsored by Human Resources and Social Development Canada. The survey selection that serves as a source for this particular post is in regards to questions answered by parents of Canadian children with disabilities.

For most parents in Canada, the impact of having a disabled child tends to spread across many different aspects of life. From marriage and relationships to finances and extra support, having a disabled child can put strain on the daily lives of Canadian parents.

Interestingly enough, one pattern noticeable across each survey category was that parents experiencing increased hardship were those whose children could be classified as severely disabled. Severely disabled was categorized by PALS using a points system in which more limitation caused by a disability led to a “higher” point value and more severe disability; they also used the World Health Organization to develop the categorization. The categories were labeled as mild, moderate, severe and very severe.

More than twice as many parents of severely disabled children reported their child’s disability as their main cause of stress as compared to parents of mild or moderately disabled children. Many families of disabled children were forced to modify or reduce their work schedules to accommodate taking care of the child’s needs. Between average families and families with disabled children, there was a 6% increase in families beyond the Low-Income Cut-Off.

The relational impact of caring for a disabled child has also affected many Canadian parents, according to PALS. 60% of survey responders reported having changed relationships since the birth of their disabled child. Nearly half of those responders admitted that the child’s disability was the main cause for the split. The statistics were slightly higher in this category again for parents of child with severe disabilities.

Similarly, while nearly half the parents of disabled children reported feeling as though they should be doing more for their child, 78.8% of parents of severely disabled children felt the same way. Yet, many barriers to “do more” for their disabled children were identified by Canadian parents in the PALS results.

Only one fifth of Canadian parents of disabled children reported having help to care for their child. Of this, the highest percentage (56.5%) of help came from family members living outside of the home. Government programs and agencies made up only 37% of assistance. The main reason most parents of children with disabilities do not seek outside help is the heaping costs. An overwhelming 73.5% of parents reported cost as the biggest obstacle.

The PALS report reveals that while many Canadian parents wish to do more for their children with disabilities, many cannot because of the mounting costs of this assistance. What parents need is financial assistance to improve care for their child as well as quality of their own lives.

The National Benefit Authority helps families with children who have disabilities file for disability tax credits. Visit the National Benefit Authority website to find help obtaining money owed to you by the Canadian Government. Do not let the financial burden of a disabled child keep you from having a full life any longer.