Disability Support Program for Dummies

Ok, please don’t be offended by the title of the post. I do not think you are a dummie or an idiot. In this post I will explain some of the financial supports available through the Disability Support Program in an easy to understand way with some “good to know” facts. I have been a client of the PEI Disability Support Program since 2006 and have learned about the following financial supports through my personal research from asking the right questions and reading the DSP policy. Some of these supports are only for children with a diagnosis of autism, but many of them are for any special needs child who is eligible for DSP support.

It continues to shock and sadden me how many families do not know what supports are available to their family through the Disability Support Program (DSP) to help with the additional financial needs associated by raising a child affected by Autism.  This post is meant to help you become aware of the resources available to your family. Please understand that the needs of each family are unique and all families may only need some of the supports (unmet needs) available to them through the DSP program. The key is knowing what supports ARE available so you can tailor the program to meet the needs of YOUR family.

The disability support program is a financial support system. They do not have the capacity (from my personal experience) to actually support families affected by a disability outside of this financial bubble.  The name of the program is misleading isn’t it?

Families are just looking for help when they contact the DSP program for the first time. They do not know what is available and from recent first hand reports from parents, the DSP case workers are still beating around the bush when it comes to full disclosure of what is available. Wouldn’t it be great if at the initial meeting a family has with their Disability Support Case Worker they are presented with a copy of the Disability Support Program Policies (or simplified guide) and walked through the individual supports that are available to the family to help alleviate the stress of navigating through the confusing system?

Here is my attempt to help:

Intensive Behavioural Intervention (IBI) for Preschoolers
Available to: Preschool Children with a confirmed diagnosis of Autism.
Available when: Once they are enrolled in the Government Preschool Autism Program and confirmation is provided by the Preschool Autism Specialist assigned to the child’s case.
Max $$ per week: Funding is provided for 20 hours per week at a rate of $10 per hour (which has not increased over the past 11 years). $200 per week plus employers contributions are available. Note that vacation pay and workers compensation is not provided by the DSP program, only CPP and EI is funded. Therefore the extra comes out of the pockets of families.

Good to know: Preschool Autism therapy can take place in a home environment or a child care environment depending on the needs of the family/child. There are different funding arrangements that are available to families which include: Family hiring the tutor and supervising the work in their own home. In some cases therapy takes place in a child care setting. When this happens, families need to speak with the owner and decide who is the employer of the staff person and how he/she will be paid. I have seen both cases where the parent is the employer and the tutor is present at the child care center to provide therapy with the child and there are cases where the DSP funding is turned over directly to the child care centre and they are relieved of employer responsibilities. There are pros and cons to each option and it varies from family to family.

Intensive Behavioural Intervention (IBI) for School Age children
Available to: School Age Children with a confirmed diagnosis of Autism.
Available when: September of the year they enter Grade One until they graduate high school.
Max $$ per week: This varies during the calender year. During the time a child is attending school, funding is provided for 10 hours per week at a rate of $10 per hour (which has not increased over the past 11 years). $100 per week plus employers contributions are available. Note that vacation pay and workers compensation is not provided by the DSP program, only CPP and EI is funded. Therefore the extra comes out of the pockets of families. But when school age children are on summer break and school breaks such as xmas and march break, they have access to up to 20 hours per week, with employers contributions available on top of the wage amount.

Interesting to Note: Programming and training for the tutors who work with school age children is non-existent unless the parents are capable of training and/or providing programming for their children or opt to hire a private autism consultant. The Autism Consultants at the school board (from my experience) only provide support for children with autism within the school day, no programming for home or community environments.

My biggest pet peeve with this current system is that school age children affected by autism have access to 20 hours of funded therapy per week during the school breaks with no programming support or training for staff. While preschool children on the waitlist for treatment are denied access to the 20 hours of funding to begin early intervention until there is space for them in the Government Preschool Autism Program. Where is the accountability? Doesn’t this sound like discrimination based on age?

IBI Materials
Available to: Preschool Children with a confirmed diagnosis of Autism.
Available when: Once they are enrolled in the Government Preschool Autism Program. Funding ends when a child enters Grade one.
Max $$ per month: $300 is available during the first month for start up costs such as kid sized table chairs, organizing/storage materials, binders, and direct program materials. Every month after, families have access to $100 to purchase new materials for programming.

Interesting to note: Funding for the Intensive Behavioural Intervention for preschool and school age children as well as material costs actually comes from the budget of the Department of Education and Early Childhood Development and funneled through the DSP program for distribution. I understand that Government is working on taking this out of the DSP program, but are still working on how best to distribute these funds to families.

Diapers (Incontinent Supplies)
Available to: Any special needs child over the age of 3 that is eligible for the DSP program.
Available when: The month the child turns 3 until they become toilet trained.
Max $$ per month: I am not aware of a maximum dollar amount on this item. You get what you ask for in my experience. You need to determine approximately how many diapers your child will go through in a month and come up with how many packages of diapers are needed. This number will become your monthly total unless you contact your DSP case worker to ask for an increase or reduction.

Good to know: The funding for diapers can be included in the monthly cheque or you can have an account set up at a local store which will invoice the DSP program for cost of the diapers, up to the prenegotiated monthly funding amount on your case plan.

Respite
Available to: A family with a special needs child that is eligible for the DSP program.
Available when: As soon as a child qualifies with an eligible disability into the DSP program.
Max $$ per month: $430

Good to know: The function of respite is to relieve the primary caregiver for a specific period of time while facilitating a positive experience for the individual with a disability. Respite is not funding for daily child care and the needs vary from family to family. A parent who stays at home with their children may need a period of respite during the day, but a working parent may need their respite in the evenings or the weekends. If you refer to Appendix C on page 43 of the DSP Policy it will show you the breakdown for the respite funding that is available. The breakdown is as follows: There is a total of 4 days X $70 day = $280 per month. In addition there is a maximum of an additional 15 hours X $10 per hour = $150 per month. There are no additional funds for employers contributions for respite if the person hired is your employee and not contracted. A mother recently told me she felt bad for asking for a small amount of respite funding. Parents: you need to take time for yourself so you can recharge your energy to take care of your child(ren).

Support Coordination
Available to: A family with a special needs child that is eligible for the DSP program.
Available when: As soon as a child qualifies with an eligible disability into the DSP program.
Max $$ per month: $200 (Approx 20 hours X $10 per hour)

Good to know: Many people are not aware of the funding for support coordination. It can be referenced under the heading “Specialized Supports – other supports” on Appendix C on page 43 of the DSP policy. A support coordinator can help the family coordinate their disability services, such as set up scheduling for IBI therapy or respite time, prepare materials for families in the preschool IBI program, assist in the paperwork around being an employer or keeping track of receipts and/or logs for the DSP program. Again, the needs of a support coordinator can be tailored to the needs of the individual family. There are no additional funds for employers contributions.

Home Modifications (Fence, etc)
Available to: A family with a special needs child that is eligible for the DSP program.
Available when: As soon as a child qualifies with an eligible disability into the DSP program.
Max $$ per lifetime: $2000

Good to know: There is a lifetime maximum of $2000. This financial support has benefited families affected by autism by providing such supports as fencing if the child is a flight risk or in other cases it has helped families with renovations for a therapy room. Again this support varies depending on the needs of the child/family.

In conclusion
Families new to the program will be happy to know that the monthly funding total is mailed to families the first of every month in advance.

If I can offer one piece of advice when dealing with the Disability Support Program it would be this. Always take a friend (or mother, spouse or community member) with you to meet with them. They can support you if they have been through it before or they can calm you down if the meeting is emotional.

As I enter school age supports with Brandon, I will be asking new questions for the Disability Support Program. At which point I will follow up with another post for an update.

Raising a child with special needs should be celebrated and nurtured. I think I am special to be blessed with these angels that teach me so much about me and life.