Parents jusqu'au bout! and L'Étoile de Pacho launch "Equity for all disabled children"
Click here to expose this injustice
- Natural families (parents) receive an average of $25,632 annually to subsidize their disabled child's care at home.
- Foster families, on the other hand, receive an average of $44,264, or 70% more than natural families to subsidize care for disabled children.
- Whereas the amount paid to foster families varies according to the child's limitations, the Supplement for handicapped children with exceptional care needs (SEHNSE) is only available to 1,634 of the 36,000 Quebec children living with a disability.
MONTREAL, July 11, 2018 /CNW Telbec/ - L'Étoile de Pacho – a support network for the parents of disabled children and Parents jusqu'au bout! mandated Raymond Chabot Grant Thornton to conduct an Economic analysis of support for families with a disabled child (french only)1.
Based on the findings of the accounting firm's study made public today, the two organizations representing parents of disabled children have concluded that these parents are the victims of a serious injustice with respect to the support they receive compared to that received by foster families. While the government offers an average of $44,264 to foster families caring for a disabled child, parents who care for their own disabled child at home receive an average of only $25,632.
This significant average difference of $18,632 severely penalizes parents who in many cases struggle to pay for the medication, personal hygiene care, and numerous medical treatments their disabled child requires.
Fairness in financial support for all disabled children
To put an end to the precarious financial situation of parents who wish to keep their disabled child at home, the government would have to apply the same 6-level rating scale for assessing a disabled child living with their natural family as is currently used to determine the amounts paid to foster families. In other words, it means using the same scale for all disabled children – regardless of the "family" they live with.
"My son will never be independent; he needs to be tube-fed every four hours. He requires 24-hour nursing care and his total care costs nearly $55,000 per year. I had to quit my job to care for Zakary. He would have access to more services if he were placed in a foster family. It makes no sense and it's totally unfair," said Marie-Ève Tétreault, mother of 4-year-old Zakary.
"The rating scale already exists. It's used for foster families to determine the level of support to be provided, based to the child's limitations. Why not offer fair treatment to all—natural and foster families alike—and use the same scale for natural families?" asked Geneviève Dion, co-founder of Parents jusqu'au bout! and mother to Naomie, aged 6, who suffers from an extremely rare and serious genetic syndrome and who will always have the same needs as a newborn.
"Not disabled enough" to receive the SEHNSE
The existing gap is even more glaring for those families who are not entitled to the Supplement for handicapped children with exceptional care needs (SEHNSE) introduced by the provincial government in 2016. Since the SEHNSE does not allow for intermediate levels, more than 50% of families that apply for this program are refused, since the government judges their child's disability to be not sufficiently severe. As a result, only 1,634 of the 36,000 disabled children in Quebec have access to it.
"There are thousands of such cases of injustice, of children deemed "not disabled enough" to receive the SEHNSE and of families left to themselves to pay for the highly specialized and extremely costly needs of their disabled child. Despite the recent announcement that the government was making the eligibility criteria for the SEHNSE more flexible, the majority of parents of disabled children in Quebec still don't have access to adequate financial resources," said Nathalie Richard, founder of L'Étoile de Pacho, a support network for the parents of disabled children.
Supporting the parents of disabled children: a preferred solution
As medicine evolves and natural families deal with increasingly complex diagnoses, the mentality has evolved as well. Today, in Quebec, in choosing between a hospital or a home setting, the preference is to care for disabled children at home whenever possible. As shown by the Raymond Chabot Grant Thornton study, if these children were cared for in a hospital setting, the government would have to pay up to $81,373 per year per child, or 150% more.
For all of these reasons, the two organizations believe prompt action is required to correct the injustice done to the parents of disabled children; fair support must be provided to natural families who wish to care for their child at home.
About Parents jusqu'au bout!
In February 2015, Parents jusqu'au bout! was created to promote financial equity between the natural families of severely disabled children and foster families that receive government compensation to provide care for these children. www.parentsjusquaubout.com [in French only]
About L'Étoile de Pacho – A support network for the parents of disabled children L'Étoile de Pacho is a support network for the parents of severely disabled children. A community organization founded in July 2013 in Montreal, it consists of a team of mothers with disabled children who provide peer support to parents whose children have just received a diagnosis of severe disability.
The parents of severely disabled children up to age 18 who are dealing with difficult situations that result in psychological distress and precarious financial circumstances are entitled to receive specific assistance, at no cost, through one of three support programs.
L'Étoile de Pacho has a mission to create favourable conditions for the parents of these children by providing services and tools to support the adaptation process, empowering them and thereby encouraging social inclusion. www.etoiledepacho.ca [in French only]
SOURCE Parents jusqu’au bout!
For further information: Fréderick Truchon-Gagnon, NATIONAL Public Relations, [email protected], T : 514-843-2349, M : 438-350-1001