FAQ for whānau

+ What is speech and language therapy (SLT)?

Speech therapy is the assessment and treatment of communication problems. It is performed by speech and language therapists (SLTs), sometimes referred to as speech and language pathologists (SLPs). Speech therapy techniques are used to improve communication. These include articulation, language, social skills, literacy intervention and more, depending on the child’s needs. Therapy will often be play-based, particularly for younger children, and involve support and strategies for parents, teachers, and caregivers to utilise between sessions.

+ Why is SLT the service you've chosen to fund?

The parents who founded UpsideDowns researched academic literature from around the world and concluded that if there was one thing to make available to every child with Down syndrome, it should be speech and language therapy. We have kept on top of the research ever since, and time and time again are proved correct. High quality speech therapy improves academic, cognitive and social skills of course, but also contributes to better mental and physical health outcomes. However, what is also consistently proven is that regularity and individualisation are key to the success of speech therapy for kids with Down syndrome, and this is both expensive and not Government-funded. Hence why our remit remains to fund as much speech therapy for Kiwi kids with Down syndrome as we can.

+ What about the speech therapist my child's school/kura is arranging?

The Ministry of Education does employ speech and language therapists that schools and early childhood centres can refer children to. However, the Ministry operates on something they call the “consultative model” of speech and language therapy, which means that these therapists are not able to provide the regular, individualised speech and language therapy we know that kids with Down syndrome require. You are absolutely encouraged to engage with these therapists as well. This support and ours are not mutually exclusive and the practitioners themselves are skilled and qualified individuals, but the private therapy we fund delivers a crucial intervention that the Ministry of Education does not currently provide.

+ My chid still doesn't speak - is there any use continuing to use spoken language with them?

For many people with Down syndrome, receptive language (what they hear and understand) is good but expressive language and speech haven’t yet caught up. This can be for a broad number of reasons, ranging from low muscle tone and relative macroglossia (a large tongue compared with the mouth) to speech organisation difficulties (apraxia) to listening and sound awareness difficulties, combining to make talking difficult for them. A speech therapist can assess your child’s speech and work out the most efficient way to get your child talking or communicating. It is definitely valuable to continue using as much spoken language as you can. If your child’s not ready to learn certain skills yet, they may be in future.

+ Is SLT important for feeding as well as speech?

Yes, SLT helps people with eating and drinking as well as their spoken communication. The feeding journey for infants with Down syndrome can be challenging, particularly if children have experienced a lot of ill-health in their early years. Only some SLTs specialise in feeding and feeding is best managed from a multi-disciplinary approach with others in your child’s medical team, so the way your SLT supports your family with feeding problems may differ to how they help with communication problems.

+ What can I do at home while I'm not seeing an SLT?

Lots! If you’re on our waitlist or are struggling to find a therapist, there are lots of SLT activities you can do with your child in the meantime. You’re probably already doing a lot of helpful things for language development, just the same as for a typically-developing child, like reading books, talking with your child, imitating their sounds, and making eye contact.

This resource from the New Zealand Down Syndrome Association (NZDSA) might be helpful.

+ What is Makaton? Is it the same as New Zealand Sign Language (NZSL)?

Makaton is the use of signs and/or symbols to develop spoken language – It is a bridge to spoken language and literacy. New Zealand Sign Language (NZSL) has it’s own unique structure and culture which differs to the structure and culture of spoken language. In NZ, Makaton signs are a selection of NZSL signs that are commonly used every day words, obvious to interpret and easy for hands with fine motor difficulties to make.

+ Is Makaton going to hold my child's speech back?

Not at all. Research has shown that using signs and symbols actively encourages the development of speech and language skills. As children with Down syndrome tend to be good visual learners, this can be a particularly effective strategy. When using Makaton however, it’s important to always speak while we sign or use visual symbols to make the link between the sign/ symbol and the spoken word. Many children then drop the signs or symbols naturally at their own pace, as they develop speech. Adults should continue to use the signs anyway, to continue to develop children’s understanding. If spoken communication is not going to be possible for an individual, Makaton has provided a good foundation for developing NZSL skills.

+ What is the recommended frequency of SLT?

This will depend on your child and your particular situation, and we recommend you follow the advice of your therapist. However, our funding options are designed to enable fortnightly sessions for most families, and the recommendation from the world’s leading expert on this subject, Sue Buckley, is that “Children should be seen by an SLT at least monthly and some will need weekly sessions” (Buckley and Le Provost, 2000). The right frequency for your child will likely change as they progress on their communication journey.

+ What age can we start SLT?

Although we recommend the sooner the better, it’s never too late for SLT to have an impact for a child with Down syndrome. Unfortunately, we only fund up to the age of 21, because research suggests that there is limited efficacy after this stage. SLT has the biggest gains before the age of 12, with a gradual decline in efficacy following this, however some research is now suggesting that short, intense bursts of several sessions a week for a month or two for older teens can have a similar level of benefit to regular SLT in younger children with Down syndrome.

The earlier SLT begins, the bigger an impact it has on other aspects of a child with Down syndrome’s development; brain plasticity, social skills, memory, and reasoning. Even if you are not intending to start SLT in the short-term, we recommend applying and joining the waitlist as soon as you can, so that you are in a good position if you need to wait a few months for the funding to become available.

We regularly accept applications from ages 0 to 20 and everything in between. Once or twice we’ve even had applications on behalf of babies who weren’t born yet!

+ Why does the therapist want me to be there for the session?

It can be frustrating to be spending money on a professional to engage with your child, only to find that you are asked to be present as well. However, an SLT session can be as much about empowering and developing your skills as the primary caregiver as it is about engaging with your child. In addition, you are the one who knows your child best, and having your knowledge to hand can be extremely helpful for the SLT as they develop a programme for your child. Even if you are predominantly observing and not engaging in the session, this still improves outcomes significantly, and means you are getting the most out of each session. Instead of receiving just one SLT session per week or fortnight, by carrying out strategies and activities at home, your child will be receiving SLT every day, and therefore learn much more rapidly. Once your child is older, you may find that your presence is no longer required, though this will depend on the individual circumstance and the recommendation of the SLT.

+ How do I find a therapist? Do you fund anyone?

UpsideDowns does not recommend particular therapists. This is because we believe strongly in whānau choice, because the relationship between child and therapist and whānau and therapist is important, and also because we don’t want to bias the whānau we support in any particular direction.

However, in order to receive funding from us, your therapist needs to have current New Zealand Speech Therapists Association (NZSTA) registration and we need to have their current Annual Practicing Certificate (APC) on file. This is to ensure the quality of the service we deliver and to keep both our members and our therapists safe.

If you are struggling to find a therapist in your local area, we are able to inform you of the therapists other UpsideDowns members near you are working with in order to narrow your search.

+ Can I change therapists?

Yes. If your SLT becomes unavailable, you’d like to try a different technique, or it’s just not working out for whatever reason, you can start seeing a different therapist as long as they are NZSTA-registered and we have their current Annual Practicing Certificate on file. Make sure you check this with us before starting sessions to avoid incurring costs that we aren’t able to fund. If you need help finding a new therapist, just email us at info@upsidedowns.co.nz

+ Can we use the funding for group therapy?

We would always recommend that SLT is individualised for your child. However, some whānau find that pairing up with another and doing sessions together saves on logistics and costs, and we are able to fund these sessions as long as invoices are received from NZSTA-registered SLTs. We can also fund larger group therapies under these same parameters but recommend that these supplement individual sessions rather than standing alone.

+ Can I get funding for a special overseas or online therapy course?

In order to ensure the quality of the therapy we fund, to protect our member whānau and ourselves, and to respect the assurances we give our donors and grantors, we can only fund therapy carried out by an NZSTA-registered trained and qualified professional within Aotearoa New Zealand. We are a very small team, and do not have the capacity to research, quality check, and supervise alternatives. In addition, the conditions of most of the grants we receive include that the funds are spent exclusively within the country.

+ Is anything else covered apart from SLT?

At present, we are only able to fund SLT invoices from NZSTA-registered therapists whose current Annual Practicing Certificates we have on file. These can include the following: • SLT sessions • Consultations • Assessments • Participation in IEP meetings • Reports • Resources • Travel costs billed by the therapist We do not reimburse the following: • Late attendance fees • Cancellation fees • Postage • Late payment fees Outside of any special programmes we run, we are not able to fund occupational therapy, physical therapy, music therapy, the purchase of devices, or other related costs. There are often ways to receive funding or subsidised rates for these and other associated costs however, and you are welcome to contact us to receive more information.

+ How does the funding work?

Simply send us the invoices you receive from your NZSTA-registered speech and language therapist, and as long as they are less than 3 months old, we will reimburse them into your bank account at your chosen rate until your funding cap is reached. At the start of each new financial year (1 April) your cap will reset and you can start sending them to us again.

If you qualify for Option 3, your therapist can send the invoices directly to us.

Invoices are processed each month, so the invoices we receive in April for example, are paid in the first 5 working days of May. Scroll down to the bottom of this page to see a flow-chart of the process.

+ How long does the funding last?

Once you apply to UpsideDowns, you will go on a waitlist for funding. Once it is your turn to come off this waitlist, you will become a member of UpsideDowns. After that, we guarantee funding for your child’s speech and language therapy until your whānau chooses to resign or until your child turns 21. There is no re-application process once you are a member (unless you resign), only the $15 annual membership fee charged each March, which can also be waived in certain circumstances.

+ How much of my speech therapy costs will be covered?

This depends on your personal choice and also your circumstances. Each financial year (1 April – 31 March) you can choose from one of the following options:

1. 50% up to $2,200 a year
2. 80% up to $1,100 a year
3. 100% up to $2,200 a year in circumstances of significant financial hardship – a separate application process applies. If you want to stay on your current option when the new financial year comes around, you don’t need to do anything, we’ll just keep it the same on your file. If you want to change, just respond to the email you’ll be sent in March alongside your annual fee. Once you have claimed funding in any particular financial year, you cannot change your funding option until the next financial year.

+ Do I qualify for Option 3?

To qualify for Funding Option 3, the Board needs to be satisfied that you meet the financial hardship criteria. The most common and straightforward way of doing this, is to send us evidence that you are currently in receipt of a means-tested benefit such as Jobseeker, Sole Parent, or Accommodation Supplement.

The Board does consider other circumstances however, and if you are unsure you can contact us to discuss further.

+ How long is the waitlist for funding?

Our waitlist is always growing – we receive around 4-10 applications every month, and it usually sits at between 20 and 40 families at any one time. Our goal is for no whānau to be waiting for longer than 6 months, but this is always dependent on the donations we receive and the resignations of other members.

If you are on our waitlist, you are always welcome to contact us and check in on your position and an estimated time remaining till funding becomes available.

It’s also good to know that some speech therapists also have to operate waitlists, so it could be a good idea to get in touch with prospective therapists before you are taken off the waitlist so that you can begin immediately.

+ Should I apply even if there's a waitlist?

Absolutely! We won’t know we need to source funding for you unless you apply. A lot of the grants we apply for are location-based, so applying for funding can help us to fundraise not just for you but for the other families in your area.

Once you are on the waitlist as well, you’ll be kept up to date with our events and opportunities for members that come up. Our fundraising goals rise to meet demand, so please don’t feel that you’ll be taking anyone’s place if you apply.

+ How old should my child be when I apply?

We fund any child with Down syndrome from birth to age 21. The reason for this age range is that evidence shows that speech and language therapy can be effective for children and young people with Down syndrome at any stage within these parameters.

However, early intervention is something we are passionate about. Research shows that quality SLT intervention in babies as young as 6 months of age makes a big difference to their long-term communication potential. We would always recommend the earlier you apply the better, particularly as we have to operate a waitlist.

+ How will the information I provide be used?

We gather compulsory demographic information such as birth dates, addresses, and contact details of our members. Without this information, it would be impossible to administer the Trust, but we do not share it with anyone without permission. We might apply for a grant for the “7 children we support in the Nelson District” for example, but no identifying information is shared.

We also have non-compulsory information we ask for at the application stage. This information is very helpful for us, but is not as crucial for the running of the Trust as the compulsory information. Ethnicity information for example, helps us know whether or not we are reaching all ethnicities in Aotearoa equally, and which groups might need some extra attention at any one time.

All of this information is kept private unless we have express permission, and is only shared in generic, non-identifiable ways, for example “10% of our membership are Pasifika”.

+ Do I have to be a New Zealand citizen to get funding?

No – you just need to live in Aotearoa New Zealand and for the therapy to take place in New Zealand with an NZSTA-registered speech and language therapist. Residency and citizenship status are not factors at all in receiving our funding.

+ How can I help the Trust?

There are lots of things our members and supporters can do to help out! Here are just some ideas: • holding a mufti day at your school • running your own fundraiser like a quiz night at your local pub or a bake sale in your community • doing a sponsored run/walk/cycle etc. • recommending us when a person or company are looking for a charity • letting your friends and communities know about our regular giving options • following us on social media and sharing our posts • sending us good quality photos of your child that you’re happy for us to use • sending us a message to let us know how your child is getting on with their SLT

+ What are my responsibilities as a member?

Members of UpsideDowns are responsible for organising their own speech and language therapy sessions, and sending us their invoices within 3 months in order to ensure they receive funding.

Members are responsible for prompt payment of the $15 annual fee each March in order to remain members with access to speech and language therapy funding.

Members are responsible for providing the Trust with the information required to administer the Trust.

It is not compulsory for members to provide images of their children, stories of their learning journeys, or any other information beyond essential details. However, the Trust’s ability to raise funds for members’ therapy is dependent on receiving this kind of information from at least some of our members, and we very much appreciate any support in this area.

+ My child needs speech therapy but doesn't have Down syndrome - can you help?

Unfortunately, we are unable to help in this situation. Although we are aware there are many other children who require SLT and are unable to receive it, we are an organisation dedicated to servicing those with Down syndrome only. We currently fund an estimated one third of the children with Down syndrome who need us, and our focus is on reaching this community.