Leap's letter to the Taoiseach

Taoiseach Leo Varadkar

Houses of the Oireachtas

Leinster House, Kildare St

Dublin 2                                                                                              23rd March 2020

Dear Taoiseach

Re: Actions Needed Immediately to support Individuals with Intellectual Disabilities or Autism and Their Families

We commend the actions that you and your government has taken in light of the Covid-19 pandemic to ensure supports and services to those who may have lost their jobs or income and who are at risk of eviction. We support The Wheel’s call to strengthen the Community and Voluntary Sector’s ability to respond to vulnerable people who are at risk and self-isolating. 

We have read with interest the Government’s Action Plan for the Community Response to Covid-19 and believe that it is an important first step but are very concerned that it doesn’t make any reference to disability.  We want to ensure the voices of families of children and adult sons and daughters with intellectual disabilities or autism, persons with intellectual disabilities or autism themselves and those who support them do not go unheard during the current crisis.

·        Most children and adults with intellectual disabilities or autism will only remain safe if they have personal supports in their lives. For as many as possible, this principally will come from families, but unsupported, families will still be at risk [1]

[1] There are thousands who do not have family in their lives and require the support provided by disability service providers. 

·        Many individuals with intellectual disabilities or autism will not understand their degree of vulnerability, particularly as this population has a higher incidence of health challenges. They will not be able to take the necessary precautions on their own and some cannot communicate readily or independently when unwell and potentially symptomatic. These are just a few of the challenges that require a coordinated and detailed response from government in collaboration with families and those who provide services and supports.

 ·        Many parents are struggling to cope with the closure of schools; however, the challenges are far more complex, intense and demanding for families who have children with disabilities. Families and their children with disabilities need both teachers and schools to make a commitment to develop and provide materials as well as the means for parents to help their children learn while at home. As Special Needs Assistants (SNA’s) will not be working with children in school, we call upon the government to consider redeploying this cohort of the workforce, with appropriate safeguards, to work in family homes.

 ·        The risk for all is heightened as the social care workforce self-isolates or otherwise becomes compromised. We need a coordinated mechanism that mobilizes the pool of staff who typically work during the day to support adults with intellectual disabilities or autism to be on a roster to support individuals in their homes now that day programs have closed.

 ·        As families may not be able to find or retain home support staff, they require a greater degree of flexibility in how to fill those roles. We are asking government to be more flexible in how funding is used and where a family cannot fill a role, that family members can be paid to fill the roles themselves.

·        In addition to the usual precautions (washing hands and sneezing and coughing into elbows) some families and support staff require Personal Protective Equipment (PPE).  To date we are not aware that this need is being addressed.

 We are seeking greater flexibility in the existing funding that families and individuals already receive, in terms of:

1. Being able to expend funds on other needs, for example, access to online software or the purchase of items their children can use at home while schools are closed, or their adult sons and daughters can use given community restrictions and the closure of day services.
2. Being able to increase their staff’s wages during the Covid-19 public health emergency, within their allotted funding.
3. The provision of direct funding to families where an agency can no longer provide staff to support an individual, or the ability to charge the agency back if they are able to secure staff.

 We call upon government to work with us in reaching out to families of children with intellectual disabilities or autism and those families actively supporting their adult sons and daughters with disabilities, to ensure they are safe and to attempt to address any factors that are putting their lives at risk.  We know and commend those service providers doing this for the individuals and families they support, but there are thousands not attached to a provider. Specific measures will be needed given the particular challenges families face if they have a child with disabilities over and above the challenges many people now face.

 At the very least we are seeking an announcement from government that it recognizes the challenges families and individuals with intellectual disabilities or autism are facing, and that they will not be forgotten by the State in its response to Covid-19.  Even if the specifics are not yet known and to be worked out, families and individuals with intellectual disabilities or autism need the reassurance of government that it recognizes their unique circumstances and will respond accordingly. 

For those families now reaching out for support we need a public shift in government’s responsiveness from, ‘we have no resources or there is an indeterminate waiting list’, to ‘how can we help?’  There are multiple ways in which we can do this collaboratively with the Irish government and we are open to engaging immediately in how to best proceed. We realize that this is one additional vulnerable group of citizens to take into account but in keeping with your appreciated actions and commitment to date, this is about all of us being there for each other.

Thank you for your time and attention to this request. We look forward to hearing from you.

Yours sincerely

LEAP

Rachel Cassen, Director

Keara Campbell, Chairperson 

cc. Minister Simon Harris, Minister Michael Ring, Minister Joe McHugh.