In light of the COVID-19 Pandemic and the shutting down of public programs and services which are vital to adults and children with a range of special needs, ACT, in consultation with parents and professionals, has drawn up the following list of recommendations to the Ministry of Children and Family Development and the Ministry of Social Development. We note that the MCFD website indicates that “We are also looking at all our options to continue supporting parents and providers.”
While ACT – Autism Community Training’s links are primarily with the autism community, our reach is much wider as we offer free information services across special needs. However, the majority of children receiving funding in B.C. have a diagnosis of autism. It is our hope that the following recommendations will be actively considered. Their implementation would do much to assure families and adults with neuro-diverse conditions that the provincial government recognizes how this crisis is affecting them and is prepared to act quickly and efficiently.
As our community support system has shut down over the past few days, families and individuals who are dependent on daycares, group homes, therapists, care workers and respite providers are struggling to maintain safety and a sense of normality. There is a sense of real desperation among families and individuals, many of whom are on low incomes, especially those who are supporting multiple high needs children across the age-range.
The measures offered below are aimed at identifying immediate steps that the provincial government can take to lessen the financial pressures on families supporting children and adults with a range of needs, their service providers, as well as adults receiving Person with Disabilities allowances and respite funding. This includes families receiving Autism Funding/At Home Program/ Respite Funding across special needs.
These are practical recommendations that are relatively easy for the provincial government to implement. They focus on increasing direct funding, allowing families flexibility in how the money is spent, and relaxing time limits for expenditure for those already receiving funding so that new funding agreements are not necessary and funding for therapy is protected, even if it cannot be expended within the contracted period. They will supplement the steps that the federal government has taken which do not compensate for the provincial services that are being cut.
Implementation of these recommendations will allow social workers to focus on the needs of families who have been identified as significantly at-risk even prior to this crisis. Children and Youth with Special Needs Social Workers should have the authority and the funding to work with service providers to provide additional funding/services when available to address emergencies. All efforts should be made not to take children into care when the root issue is the chronic lack of funds and support services available for families of children with special needs.
Supporting Families of Children with Special Needs
Specific to Respite Funding:
Schools are closed, possibly until September, and many parents of children with a variety of special needs will not be able to find respite providers or any form of childcare. Many families rely on a single income or rely on income support; others will be forced to go on unemployment insurance which will mean a reduction of income. In light of these circumstances, recommendations include:
- Allow families to use their respite money ($233 a month) to look after their children themselves until the public health emergency is ended.
- Double the amount of respite funding that each family receives so that they have the means to look after their high-needs children.
- Expedite respite funding to all children with special needs who are on the current waiting list, including all children receiving autism funding.
- Extend by six months, after the public health emergency is over, the deadline for families to spend their Autism Funding/ Respite Funding/ At Home Funding which normally has to be spent by a specific deadline. This recognizes that it may be months before families can again fully access service providers who, once this emergency is over, will be grappling with a spike in demand.
Specific to Autism Funding received by over 16,000 children in B.C.:
- Allow parents to carry over funding from their current funding year to the next so that their children will not miss the opportunity to access their funding.
- Relax authorization requirements so that families can pay for play/therapy materials that their children will require while they remain at home without a professional’s approval beyond the current 20% limit.
- Allow the purchase of iPads and other therapy materials by families who receive autism funding so that their autism professionals/teachers can support/monitor children remotely when appropriate without approvals by professionals. [Expenditures that are currently not allowed, will remain off limits. i.e. non evidence-based interventions such as hyperbaric chambers and chiropractic ‘therapy’.] Communicate this clearly. Use the Autism Information Service of BC to support a seven day a week hotline which can clarify parental questions on these issues, confirming information by email whenever possible.
Supporting Adults with Special Needs:
Many families will be caring for their high-needs adult children at home as day programs are closing or group homes have difficulty maintaining staff. Others have supported their children through individualized funding but have lost all their workers. As a result, many parents will not be able to work or are already retired. Allowing parents to use the money that they would normally spend on workers, so that one parent can devote themselves to their adult child’s needs, would minimize disruption for families and financial exposure.
Many independent adults depend on Persons with Disabilities funding [$1,183 monthly], supplemented by part time jobs. They will find it very difficult – many will lose their part time jobs.
- Doubling the Persons with Disabilities benefit until the health emergency is over will ensure that the most vulnerable people are better supported.
- Allow parents to use this money to subsidize the cost of staying home with their adult child when workers are not available.
- Provide additional reporting time (3-6 months depending on how long schools and programs are shut) for those parents administering individualized funding.
Many service providers including Speech Language Pathologists, Occupational Therapists, Behavior Consultants and Behavior Interventionists often wait many weeks for payment from the At Home Program and the Autism Funding Program. In order to ensure that they can weather this storm financially, it is recommended that the government:
- Ensure that new invoices submitted by service providers are paid promptly.
- Expedite the current back log of payments to service providers so that Service Providers, many of whom are in sole practice, do not go bankrupt during this health emergency.
Expediting Information Sharing
ACT is committed to helping MCFD and MSD by sharing your communications with the thousands of families and agencies we are linked to via our Facebook page and through our email service – ACT’s New Round-Up. We will send out your notifications so that families are aware of the latest information. This is important because government, including Autism Information Services BC, does not have an efficient way of mass communication with families, especially those not connected with agencies and dependent on individualized funding. Other special needs organizations are very likely to be willing to support communications so families and individuals with disabilities know that help will be forthcoming.
We also recommend that government set up a 7 day a week hotline manned by social workers, and CLBC facilitators to answer family questions around the challenges they are facing and for families to seek support. Mental health counsellors with training in special needs to advise parents will also be desperately needed and are in chronically short supply.
Establish an Advisory Council on COVID-19
Given the seriousness of the situation, government may want to consider setting up a cross disability Advisory Council of representative, active, organizations and individuals to provide ongoing information to government reflecting community concerns.
I look forward to an early response to this letter so that I may share it with those who access ACT’s information services. It is our intention to publish this letter shortly to provide assurances to the special needs community that there are efforts to advocate on their behalf.
ACT – Autism Community Training
COVID-19: Practical Advice, ACT’s Advocacy, and Specialized Resources
ACT is gathering information to support families during the COVID-19 crisis, including resources specific to those who are neuro-diverse and useful general resources. Our COVID-19 Resources page will be updated as new resources come in.
ACT is also planning free web streamed presentations by autism and mental health experts. Stay tuned!