Saturday 23 June 2018

The hidden cost of autism: 'We've spent €30k on therapies to help our son reach his full potential'

Rearing a family is expensive for most people - but when you have a child with additional needs, the bills for assessment and treatment can push you to your limit

Samantha Judge and her nine-year-old son Evan at their home in Raheny, Dublin. Photo: Frank Mc Grath
Samantha Judge and her nine-year-old son Evan at their home in Raheny, Dublin. Photo: Frank Mc Grath
Samantha Judge with Evan

Arlene Harris

When Samantha Judge noticed that her baby son was not interacting in the same way his older sisters had done, people were quick to tell her that it was nothing to worry about. But as the months went by and his developmental milestones continued to lag behind the 'norm', she decided to seek medical advice.

Several months and investigations later, the little boy was diagnosed with Autistic Spectrum Disorder (ASD) - and so began the process of examinations, assessments and therapies which would become part of now nine-year-old Evan's everyday life.

"I first noticed Evan wasn't responding the way his sisters had when he was about 11 months old, but family and friends assured me that boys were different and all children develop at their own pace," says the Dubliner, who also has two daughters, Megan (22) and Lauren (18). "He was slow to walk and when he did he would be on his tiptoes, so we were fondly calling him Evallina ballerina.

"But on top of that he often showed a lack of interest in things and I remember going through the symptoms on my own late one night with a sense of dread and a heavy heart. Evan appeared to have most of the behaviours and characteristics of ASD so I decided to get some advice - and started with his hearing."

Samantha Judge with Evan
Samantha Judge with Evan

Samantha and her ex-husband brought their son to an ENT specialist who recommended Grommets, as it was thought that he couldn't hear properly. But the speech and language issues continued and the couple sought further advice.

"At this point, we decided to simultaneously access the HSE services and seek a private diagnosis as early as possible," says Samantha. "At 22 months, he was diagnosed with ASD and we immediately put his name down with an applied behaviour analysis centre, we applied for a home tuition grant and engaged a speech and language therapist to conduct an assessment and a speech and language plan."

As would anyone in the same situation, the concerned parents tried everything to give their son the best early intervention possible. But the cost of speech and language therapies along with occupational therapy, parental training courses, home tutors and early intervention support services quickly began to add up.

"Within a month, the financial cost of this was around €2,000," says Samantha, who is now the CEO of Autism Ireland. "While we were accessing every possible intervention for Evan and he was placed on the early bird programme with the HSE, he wasn't officially diagnosed with autism from the HSE until he was four years and four months old."

Today is World Autism Day, when the condition which affects one in every 100 people in Ireland is recognised. But while the focus often lies on the best way to help those with autism live life to the fullest, the cost, both financially and emotionally, is often overlooked.

Catherine Cox, head of Communications and Carer Engagement with Family Carers Ireland, says there is a significant financial burden on those caring for children and adults with autism at home, including transport costs, lack of respite provision and access to necessary therapies including speech and language and occupational therapists.

"Many families have to pay privately for these supports as the waiting lists are so long - in some cases, in excess of two years," she says. "Costs for therapies vary from €30 per hour upwards, which is a very heavy burden on families who are already under financial pressures. But denying children with disabilities these vital supports at an early stage of development is denying them the possibility of developing to their full potential.

"Whilst there are pockets of respite available for Family Carers depending on where they live, the provision is completely inadequate and many carers have difficulty in accessing regular respite breaks because of the postcode lottery of services in Ireland. Access depends on which county you live in. Some areas have good supports and facilities and others have none at all - so our Carers in Crisis' campaign aims to urge the Government to standardise access to supports across Ireland and end the postcode lottery which currently exists."

Since 2011, Samantha has spent over €30k on therapy for her son, and while this is undoubtedly a huge financial undertaking, the mother-of-three says this, combined with the joint efforts put in by her husband and extended family, has helped Evan to reach his potential.

"The cost of Evan's therapy since 2011 includes €4.2k on occupational therapy (OT) and €4.2k on speech therapy (ST), along with a combination of the two, which has amounted to €5k," she says. "We also spent €5k on private tuition, €3k on therapeutic horse riding, and around €5k on summer camps.

"Between myself and my husband and sometimes our daughters (work and college allowing), we manage to bring Evan to and from school, but I could never have worked for a large organisation with fixed policies around time keeping.

"Luckily, I had my own business which gave me the flexibility to be there for Evan, deliver a good service to clients without rigid working hours and provide for the family financially. And now my new role as CEO of Autism Ireland provides the same flexibility."

Theresa Finn also spends about €500 per month on therapy for her five-year-old son Jude, who was diagnosed with autism not long after he turned two. She says it's important to look at how much needs to be done by the State to help families.

"I don't look at having a child with autism affecting my life financially, but rather the failings in our health service which affect my life in every way," she says.

"Yes, paying privately for therapy is expensive, but the alternative for Jude's development and safety and my mental health isn't worth thinking about. I receive the Domiciliary Care Allowance (DCA) from the State, which helps with paying for therapy but there are also a lot of other costs like incontinence wear and equipment.

"Caring for a child with a disability is supposed to be a shared role between family, government and society. So if the government provided adequate healthcare, therapies and education and if society took an active role in including people with disabilities, it would make many lives much easier.

"People talk about how autism affects the family, but it affects the person with autism the most - they are the ones living in a country where they don't have equal human rights to education, healthcare and job opportunities. It can be a lonely life with social communication difficulties and trouble mixing with peers. Awareness is spreading but society needs to be aware and to care about inclusion."

Dr Caroline Winstanley runs a private practice in Dublin offering speech and language therapies and assessments for children with autism. She says early intervention is vital and should involve the whole family.

"Intervention can take several forms and is not just therapy - it's a combination of the work of families, appropriate educational setting (pre-school) and therapeutic services (including psychology, SLT and OT)," she says.

"Early intervention can help the family to adapt to the different way their child perceives the world and give them a useful framework to support their child's needs going forward.

"It also helps to increase cognitive and coping skills and leads to a greater chance of a child living independently as an adult, gaining employment and developing meaningful relationships.

"Parents play a very powerful role in signposting their children through difficult social situations and advocating their needs so should be empowered to provide intervention to their child on a daily basis."

The speech and language therapist says early intervention therapies vary, as does the cost, but the earlier children receive support, the better the outcome.

"Not all children need every different type of intervention," she says.

"OT and SLT are the most commonly required therapies and within these disciplines there are many different tools and methods for working on a person's individual needs.

"It is important to remember that ASD is a condition which results in difficulties with social interaction and social communication, so individuals benefit from intervention within a social context such as group work, or increasing social opportunities to develop skills.

"But particularly in the under fives there are several conditions which can present like ASD, but are not, so it's not always helpful to jump straight into an ASD assessment or it may not actually be needed."

For more in see autism.ie and autismireland.ie; for more on World Autism Day -taking place today - see autismspeaks.org

Adding up the cost

* A private autism diagnostic assessment can cost up to €1,000, while a private psychology assessments range from €500 to €700

* Speech and language assessment can cost up to €300, while physiotherapy assessments may set you back €250

* An occupational assessment can cost €500

* Occupational therapy is from €70 to €100 a session. Speech and language therapy costs roughly the same

* An autism consultancy can cost €80

* Behavioural intervention can cost from €50 to €100 per hour

* Private tuition can cost up to €30 per hour

* Waiting lists for HSE therapies be up to two years

* According to Autism Ireland, there is no single intervention for all children with autism, but most individuals respond best to highly structured behavioral programmes.

* Autism Ireland states that some of the most common interventions are Applied Behavior Analysis (ABA), Floortime Therapy, Speech Therapy, Occupational Therapy, PECS (a type of augmentative and alternative communication technique where individuals with little or no verbal ability learn to communicate using picture cards), Sensory Integration Therapy, Relationship Development Intervention, and Verbal Behaviour Intervention.

What help can you get?

■ Weekly CARERS ALLOWANCE: This payment is between €209 and €370.50 ­- depending on your circumstances

■ Weekly CARERS BENEFIT for people who take up to two years off work to look after someone with a disability. This is €210 to care for one person and €315 for two people

■ Monthly CARER'S SUPPORT GRANT: A monthly payment of €1,700 ­- it is not a means tested payment. Carers who are in receipt of Carers Allowance do not have to apply for the grant - it automatically is part of the Carers Allowance Package. Carers who would not qualify for the Carers Allowance because of the means test but would qualify on medical grounds, should apply for this grant.

■ DOMICILIARY CARE ALLOWANCE: This is paid on a monthly basis to children from date of diagnosis up to age 16 years. This is a payment from the Department of Social Protection. The Current rate is €309.50 based on the means of the Child.

■ DISABILITY ALLOWANCE: Paid to people with a disability from the age of 16 and over. The rate is €193.

A half-rate carers allowance is paid to people already receiving certain social welfare payments

■ SCHOOL TRANSPORT FOR CHILDREN WITH SPECIAL NEEDS: The Department of Education and Skills provides school transport services for children with special needs and it's available to children who are enrolled in State special schools or special classes in state primary schools, although not in all areas. Where the special transport cannot be provided, you may be eligible for a transport grant to help with the cost of making private transport arrangements.

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