FSCD/PDD: Access and funding

Government reports from 2021 on FSCD and PDD, a 2021 report of the Auditor General, government’s Open Data and our own survey research reveal that FSCD and PDD are failing families and individuals with development disabilities. Families either find themselves having their supports and funding arbitrarily reduced or are denied needed supports while waiting lists grow to the thousands. Government’s operating policies have grown increasingly distant if not entirely separate from the governing Legislation and Regulations, in effect thwarting the will of the Legislature itself. 

The assistance previously available through these programs needs to be restored immediately. Based on the government’s Open Data, over 3,300 families eligible for the FSCD program are without any support (“In planning”). That number has grown by 54% since April 2018.  

While the government has announced plans to begin offering PDD supports to 800 adults from its “Waiting for Services” list, this list includes only individuals deemed by government to have needs that are critical or urgent. A further 1,400 adults (according to the latest Open Data) are without the PDD supports they require, and government seems to have no plan to provide support to adults on this misleadingly named “Service Planning” list.  

Between PDD and FSCD, over 5,300 Alberta children and adults with disabilities are without any disability-related supports, with those receiving inadequate support far exceeding this number. 

This number is expected to continue growing as budgets in both programs are inadequate to address the expected annual growth of children and adults with developmental disabilities requiring supports. 

In the past, these programs have played an essential social and economic role in Alberta, supporting families to raise their children with disabilities at home, parents to maintain their jobs, and adults with disabilities to live, work and participate in community life. 

We are seeking the restoration or return of these programs to their past status of being supportive in their response to families and individuals. 

Ask the candidates in your constituency if they, and their parties will commit to:

• Establishing a Ministerial task force with membership that is inclusive of family members and individuals with disabilities, Inclusion Alberta, and other relevant parties to create an action plan to return the FSCD and PDD programs to compliance with the intent of governing legislation and by acting on the multiple reviews to date.
• Stopping the unnecessary reduction of existing supports and ensure families are treated by government’s frontline representatives with respect and trust. 
• Immediately restoring adequate funding to the FSCD and PDD programs.
• Developing a plan in consultation with Inclusion Alberta and other relevant parties, to eliminate waitlists over a four-year period. Funding and implementing the plan.
• Ensuring future funding for these programs accommodates demographic growth and inflation. 
• Establishing a standing Ministerial advisory committee for PDD inclusive of family members, persons with developmental disabilities, Inclusion Alberta, and other relevant parties. The committee would provide advice and recommendations on policy and practice for PDD and serve as a means by which government can assess the effectiveness of the PDD program.

In reference to this last point, a PDD Advisory Committee previously existed and government’s review of the PDD program in 2021 concluded that this is still needed.

Provide Advances to Pay for Services with FSCD:

Research has shown that families from lower Socio-Economic Status neighbourhoods access FSCD at far lower rates than other families. Poverty impacts 16% of children and youth in Alberta and for Indigenous children living “on reserve” the poverty rate is 53%. Many of these families cannot afford to pay for services and supports upfront and then wait weeks for reimbursement from FSCD. The Child and Youth Advocate points to up-front payment for services as a change that will provide families with earlier support to access services and lessen their emotional and financial stress. Advances rather than reimbursement to pay for services is already provided to families through the PDD program and there is no reason families whose children are under 18 and therefore use FSCD rather than PDD should not be treated the same.

Ask the candidates in your constituency if they, and their parties will commit to:

• Implementing the recommendation from the Child and Youth Advocate that the FSCD program ensure access for families facing financial and social barriers by providing families with an advance as per their FSCD Agreement, as has been PDD’s practice for years.

Provide Sufficient Wage Adjustment for Disability Support Workers:

The announcement in December 2022 of a 10% funding increase for wages in PDD and FSCD contracts is a positive development. This wage increase will compensate for the 10% inflation experienced in Alberta between February 2021 and December 2022. Additional wage increases are still desperately needed because this is the first wage increase since 2014, a period over which there has been 21% inflation. It is exceedingly difficult to attract qualified workers, and many have been forced to leave the sector or work multiple jobs simply to cover basic expenses such as food and housing.  This has resulted in a severe staffing shortage for both families and service providers, placing individuals with developmental disabilities and their families at risk.

Ask the candidates in your constituency if they, and their parties will commit to:

• Address the staffing crisis in the disability sector by providing a sufficient wage adjustment to fully compensate for eight years of stagnant wages, attract qualified people to the sector, and demonstrate their value and role in assisting Albertans with disabilities to live lives of dignity, security, and inclusion.

PDD FSCD Fact Sheet AB Election 2023 (PDF)

Election 2023 platform asks here (PDF)

Return to Inclusion Alberta Election 2023 main

Background information about how PDD and FSCD have eroded in what support they offer and in how system representatives treat individuals and families

In the news:

• Children with disabilities getting inconsistent government support, Alberta auditor general finds – CBC
• Lack of training, guides means increased risk of inconsistent support for Albertans with disabilities: auditor general – Edmonton Journal

Quotes from Government of Alberta reports

“People described FSCD as complex and difficult to navigate and said the wait times for supports were lengthy, making it difficult for vulnerable families to access supports.” Report of the FSCD Review Engagement, 2021

“Reducing red tape and administrative burden on families was another prominent theme.”  Report of the FSCD Review Engagement, 2021

“Some pointed to a need for increased budget to meet the growing demand for FSCD supports throughout the province.” Report of the FSCD Review Engagement, 2021

“People commented on the importance of adequate program funding, calling it a worthwhile investment in Alberta families.” Report of the FSCD Review Engagement, 2021

“The majority of families and other participants indicated families should have faster, easier access to supports and services, including families new to FSCD and those renewing or requesting a change in an agreement for supports.” Report of the FSCD Review Engagement, 2021

”Many families and community disability workers expressed concerns about the length of time it takes to access PDD supports and services.” Report of the PDD Review Panel, 2019

“Self- advocates, families and service providers all agreed that, in many cases, service and funding decisions are made by people who have limited knowledge of the individual receiving services.” Report of the PDD Review Panel, 2019

“Most people agreed more clarity is needed on who makes decisions, what factors are considered in decisions, how funds are allocated and timely communication when decisions are made. They suggested a more transparent process for determining needs and supports – one that is understood by everyone involved and ensures the voice of the individual being supported is heard.” Report of the PDD Review Panel, 2019

“We need ongoing mechanisms for communication and collaboration and change, true partnership based on a common vision. This can’t be a once only consultation process.” – Service provider quoted in Report of the PDD Review Panel, 2019

“Eligible families should receive program supports and services based on their needs, not on who their caseworker is. But because guides, training, and oversight are inadequate, families may not receive the supports and services they qualify for.”  Auditor General report on FSCD, 2022

“The training program [for caseworkers] is not being effectively delivered.” Auditor General report on FSCD, 2022

“Oversight processes of caseworker performance are ineffective.” Auditor General report on FSCD, 2022

Comments and stories from individuals and families

Some of the comments families have reported to us or that our staff who have accompanied families to PDD/FSCD meetings have documented:

• Take out a loan and pay for therapy that way
• Retire or quit your job to stay home with your child
• If your child goes to school, that is respite
• Because you work outside the home and your son attends school, you get a natural respite break and therefore do not need more respite hours.
• You should be happy with what you get, most requests are just being outright denied
• Why haven’t you tried leaving your daughter with friends to see if they can manage her needs?
• Have you considered a group home if you are concerned about long term support for your daughter?
• Could you afford to not work and stay home with (adult son)? How long could you afford to be off of work?
• Why would you consider your son moving into his own place when we can’t guarantee the staffing hours? You should visit a group home. They have changed over the years.
• Though you are looking for inclusion for your son you might find more support in group programs for people with developmental disabilities.
• What is the worst thing your son would do if you left him home for an hour or two?
• Have you considered a group home?
• Caseworker also told the family they should expect to get little to no supports, and also said she doesn’t need to hear unimportant detail when the family was describing their concerns.
• The caseworker said that it is up to the family to utilize natural supports and that the family should be generating ideas for support.
• Your request for Employment supports will be laughed at.
• Caseworker inquired with parent about the feasibility of not working so as to be available to provide (adult son’s) support. Caseworker shared that no requests are being put forward (for FMS or Agency) unless a person’s safety is in immediate risk. Family was told that there are agencies with vacancies but no money to help.
• Caseworker asked if mom needed to work or if she would be able to leave her job to care for her son. Parent shared that as a single parent, she needs employment to meet their needs. The caseworker followed up by sharing it might be best for him to consider a respite group home, and that she was required to consider it
• When explaining the safety criteria to evaluate whether supports are needed, caseworker explained ‘before we were looking at if you were on fire – how quick we can put it out, now we are looking at how much of you is on fire and how long can you sustain it’.
• After (adult son) purchased his town home, they suggested he should move into a group home for people with Down Syndrome. Even though he does not have Down Syndrome and is a homeowner.
• I was actually told at my meeting with PDD to ‘set up a Go fund me account’ as I can’t continue to pay my support worker. My son has 2 brain tumours, legally blind, epilepsy and a plethora of other issues and they cut all his funding!
• She (adult daughter) doesn’t have any record of hospital care, what are some of the safety concerns that you deem to have?
• Your husband is a little older, it might be a good option to have him retire so he can support (family member with a disability).
• You will have to alter your work schedule to part time or quit you job so you can support (family member with a disability).
• You should build a suite and move someone to care for her into your home, a live in would be more efficient”.
• Well, I guess that you know that you’re getting the funding for (adult son) until August.  Good for you.  It’s a shame that you know how to work the system but there are all of those other families out there that don’t, what about them?

Anonymous stories that illustrate system failures:

Parents of an adult

“My husband and I have made the decision to have our child remain in our home with us for as long as we are able. It has not been an easy battle. In order for that to happen I had to completely give up employment. We are getting older. We have modified our home with ramps and lifts as much as possible. We have a wheelchair accessible van because we live in a rural area. Thank God my husband and I are of good health. 

Now we live in fear. Our current FMS contract is not enough to support someone who requires 24/7 care and two person lifts. Recently our PDD worker told me cuts are being made. Struggling as we are now it looks like we will be facing more challenges.”

We have built a good quality of life for our daughter. Now we are fearful of what may be in her future; no; what may not be in her future.”

Parents of a young adult

“My son’s PDD contract was to be renewed August. We met with our caseworker in May to ensure we did our due diligences, good communications with our caseworker and a plan to meet support entering adulthood. All of this is now gone.

Two weeks before the contract was due, I still had no paperwork from PDD. I contacted my caseworker and was told. “Look, if you don’t want to wait for a very long time, it is wise you accept a contract of minimum support and no increase”. We had already lined up his aide and had created plans.  We didn’t have the financial means to provide what was needed on our own.

It is very clear the government plan is to sweat the families out and have them give up.

It is terrifying and horrific the vast changes that are occurring and attacking those with special needs, more so those with FMS. How can I as a mother make predictable planning for my son and to know he will be safe if something happens to me, when this government continues to cut all that it promised to do? None of the promises have been kept and have been lies, hurting the most vulnerable.”

Parent of an adult

“We are still waiting to see if we are getting any form of funding. Still getting the run around from our PDD worker, says that they are trying to cut back on supports. How is our 6 hours a week is going to be cut to even less when it not even enough to support our son who cannot keep up on his own hygiene? They won’t help him get employment support either. It is very frustrating that we have to have our son suffer due to the government holding back on us. He was doing a great deal better this last year as his support was working well. He has been almost a month still waiting if he has any funding to keep his support and I am noticing him falling back into a slump.”

Parent of a young adult

“My family has been greatly impacted by the denial of PDD Funding.

My daughter’s Syndrome results in her being non-verbal and 100% dependent on us for everything. I requested funding for 3 days a week; was denied any funding at all! I appealed this decision and am awaiting the results.

I have a job and need to work and am at loss of what to do if my appeal is denied.”