Families with a child with Down syndrome in many cases face a lifetime of navigating Government departments and agencies to receive the support they need and are entitled to. COEN LAMMERS makes an attempt to point you in the right direction.

Dealing with the Ministry of Health (MoH), Ministry of Social Development (MSD), Ministry of Education (MoE), and their off-shoots can be difficult, frustrating, infuriating or even traumatic.

Having a child with a disability creates additional pressures on families, but those organisations and officials that are supposed to support your family dealing with unorthodox circumstances often only add to the stress levels.

Social media groups are overflowing with endless horrific examples of parents having to fight for what they are entitled to.

Many dread the face-to-face encounters with officials at WINZ to talk about benefits, or MoE staff when fighting for teacher aide funding in Individual Education Plan (IEP) meetings.

Many simply give up and forfeit what they are entitled to and sometimes desperately need.

Trish Grant is an experienced advocate for IHC and has seen every scenario of this state-inflicted trauma first-hand.

“Families are dealing with a complex maze of entitlements,” says Grant, whose organisation is working on a new digital tool to help families navigate the different departments and entitlements.

“At the moment it is impossible for any family to find their way with the information available from the Ministry of Health, MSD or any other Government department.”

Grant says that the system is even difficult for those who are dealing with it on a daily basis.

“One pediatrician once put up a slide at a conference to show the pathways to funding and services, but you’d have to study it for hours to make sense of it. It was the most bizarre slide.”

The IHC advocate also recalls a recent court hearing to secure a Family Carers Benefit, in which the attending magistrate described “the Ministry of Health funding policy as impenetrable”.

So if you think you are struggling to make sense of it all, you are not alone.

“It is still a maze for people to get through, especially for new parents.”

Grant says that most parents find out what they can get through word of mouth.

“That’s why groups like the NZDSA are so important where parents can share information with other parents to find out about financial support or what is on offer as far as support services,” says Grant.

Thankfully, Government agencies are recognising that they need to make accessing supports easier for disabled people and their families, and the primary examples of this is Individualised Funding, Enhanced Individualised Funding and the Enabling Good Lives (EGL) approach.

Individualised Funding, Enhanced Individualised Funding and the Enabling Good Lives approach provide disabled people and their whānau with more choice and control in their lives, offer more flexibility and provide more opportunities to make decisions about how to use the funding to suit the needs of the disabled person and their family.

EGL started in 2011 as a partnership between the disability sector and agencies aimed at long-term transformation of how disabled people and families are supported to live everyday lives.

EGL aim is to create a life plan for its participants and through a navigator applies for the necessary funding through different agencies to create a single funding pool to fulfil the life plan for the person with the disability.

The Ministry of Health allows people to receive Individualised Funding to buy in services they require, but that only covers MoH traditional supports like Personal Care or Household Management, Respite Services and Carer Support.

Enhanced Individualised Funding enables people to pay for a wider range of disability supports that have not traditionally been available and this allows for more flexibility and greater control of how you use your disability support budget.

In 2017, a group of government ministers involved in the disability sector approved a new over-arching programme to Transform the Disability Sector, The new system, Mana Whaikaha, a prototype in Midcentral was co-designed with disabled people and whānau, and others in the disability sector. It is based on the Enabling Good Lives vision and principles.

The interest in the Mana Whaikaha programme has been overwhelming and will provide invaluable information for the Government to implement a nationwide transformation.

Until that new system is established, here are the key funding streams families need to be aware of.

MSD and WINZ benefits

The Ministry of Social Development offers two global benefits and all families are entitled to the Child Disability Allowance.

This allowance is for carers of children with a disability under 16 and is currently $49.25 a week. Officially, this allowance is reviewed every year, but no longer required for children with Down syndrome, so make sure you remind the person who may still want to assess your case, especially when they start asking silly questions like “does your child still have DS?”, which has happened to many families.

IHC advocate Trish Grant says that the number of parents receiving the Child Disability allowance is decreasing.

“Many parents don’t know it even exists so I think there is a big issue there.”

Once your child turns 16, your child is entitled to the Supported Living Allowance, if the child is cared for full-time or would otherwise need residential care (or the equivalent).

Currently the benefit rate is $253 if your child is 16 or 17 and increases to $307 when they turn 18.

Your child can still have a part-time job but once they earn more than $115 a week, the benefit will start getting deducted.

On top of these benefits, you can apply for a Disability Allowance of up to $65 a week, which is for expenses your child may incur due to their disability. This includes medical appointments, travel costs, prescription fees or heating.

You will need to get your GP to confirm these needs and keep your receipts, so this benefit can be a hassle for the relatively small amount and many families choose not to go through the process.

Depending on your living situation, these benefits can also get topped up with an Accommodation Supplement, which ranges from $50 to $120 a week. If the person with the disability owns their own property you can also contact your local council for a Rates Rebate. You can visit the Department of Internal Affairs’ (DIA) website for more details.

Aside from these allowances, MSD can also provide you with a Community Services Card which provides multiple benefits and savings when paying for the bus, pool or other services.

Finally, MSD has the ability to provide one-off payments to provide assistance in particular hardship situations.

Like other children without a disability, children with Down syndrome also qualify for the standard Childcare Subsidy, or OSCAR subsidy for after school and holiday programmes.

It is also important to make sure your family gets their full entitlements under the Working For Families tax scheme.

Ministry of Health benefits

The Ministry of Health also offers a list of support options, but again, they are not easy to access or to understand.

The level of support is determined by an assessment carried out by your local Needs Assessment and Coordination Service (NASC) which is different in each region. You can find your local service under the Respite Care section on the Ministry of Health website.

The MoH offers Carer Support, which enables you to pay a support person to look after your child while you can take time out for yourself.

The Respite Support allowance is also aimed to give parents a breather, but in this case, the allowance pays for your child to go somewhere for an activity or pay a support worker to take your child to an activity.

The level of these benefits are determined in your NASC assessment and depend on your personal situation, like how many other children you care for, how old your children are and other issues that create additional stress in your household.

Sadly, it does not pay to put up a brave face, because if you tell your assessor that everything is peachy, you will receive little support, whilst describing your worst day will get you more support.

A major breakthrough in legislation in 2020 now makes parents or siblings of children with Down syndrome over 18 eligible for Family Funded Care.

This change has been created to facilitate disabled people who want to employ and eligible family/whānau member to provide some or all of their supports.

Currently, the hourly rate for Ministry-funded family carers is $20.50 per hour, which increases to $25.50 an hour if you have been caring for your family member for more than 12 years after they turn 18. Parents and siblings from 16 years onwards are eligible to become the carer.

The Ministry of Health also provides additional benefits, but they are not easy to locate or access.

Most families are eligible to have costs for glasses, fully or partially funded, through the Spectacle Subsidy for children under 15. This covers lenses, frames (and repairs!), examinations and eye patches.

You may also get some funding for dental work and other health needs, but you need to talk to your NASC, your pediatrician or GP to find out exactly what your funding covers.

If you need to travel for treatments regularly or long distances, you also need to ask for the National Travel Assistance Scheme.

The Ministry of Health can also make equipment available through their providers. Accessable and Enable NZ. This could include adjustable beds, shower stools or communications devices.

For those families who need some more assistance getting their children ready for school or when they transition to their own home, the Ministry of Health also offers the Home and Community Services.

For younger children this could consist of someone providing support with meals, showering or getting dressed.

For young adults with Down syndrome who start to live independently, this service supports this transition by helping out with cooking, laundry and cleaning.

Ministry of Education

Those of you who have or had children at school will be well aware of the Ongoing Resourcing Scheme, better known as ORS funding for students with High Needs and Very High Needs.

To access ORS you will need to complete an ORS application. It is important to remember that the application process is emotionally challenging because instead of celebrating and focusing on the achievements and strengths of the student, it requires you to look through a deficits lens to ensure that your child is well resourced.

The ORS application has nine criteria and requires you to identify your child’s need for learning support across five areas: learning, hearing, vision, physical, or language use and social communication.

Parents say it helps if you recognise that by accurately reflecting your child’s learning support needs it will clarify whether they meet the eligibility criteria for ORS. The ORS application will be submitted to a team of verifiers who follow a verification process. At least three verifiers, working from separate locations, independently consider each application. Once the verifiers make a decision, a letter is sent to the parents/whānau and the early intervention centre or school. Resources for students in the Ongoing Resourcing Scheme may include specialists, additional teachers, teacher aides, and a grant for consumables.

If the Local Ministry of Education is the fund holder, then a portion of the funding will be used for the battalion of specialists like speech, occupational and physio therapist and others employed by the Ministry. However, many parents feel that the specialist focus is on writing reports and making recommendations for teachers on how to work with their child rather than providing what they desperately want, which is one-on-one therapy.

Another very important component of ongoing resourcing is to ensure that your child has a current and well-designed Individual Education Plan (IEP) as ongoing resources will be allocated based on individual needs identified through the IEP process. It is essential that you as a parent are involved alongside the educators and professionals with developing the IEP. The NZDSA recognises for families each step of the ORS process is brutal and at times heart-breaking as there is never enough funding available.

The level of ORS funding depends on criteria across the learning support areas and will include things like how independent your child is, whether they have multiple health challenges, whether they are toilet trained and whether they tend to run away.

For this last challenge the Ministry, thankfully, has a separate Property fund they can call on to create a safety fence around the school if required.

Parents tell us that they are frustrated as they feel the ORS funding is not always transparent and not always fully dedicated to the child who receives the funding. Some schools, with genuine motives, pool the ORS funding to provide learning support for as many students as they can, including those who did not receive any funding. So it may pay to ask to get some clarity on how your funding is used.

Many deserving children struggle to get ORS funding so children with Down syndrome are fortunate as they should qualify as high needs students. It is worth noting that the review process for ORS funding can be used when an application for ORS is declined, or when a student receiving ORS funding has a significant change in their circumstances.

Getting your children to and from school can be a logistical or safety challenge so make sure you also look into School Transport Assistance, or you may be eligible for a taxi through the Total Mobility Scheme.

To find out more about ORS go to https://www.education.govt.nz/school/student-support/special-education/ors/

 

Funding through other charities

As the state funding only goes so far, numerous charities and trusts have jumped into the breach to help families at different stages of life.

To get a good idea of what is available in your region, refer to the website www.Firstport.co.nz which lists all the support services and funding agencies available in New Zealand.

One extremely successful charity is the Upsidedowns Education Trust which provides funding for speech therapy for children with Down syndrome, which is a vital asset to every child but often difficult or expensive to access through other channels.

If you child is keen on sport, it is also worthwhile to get in touch with the Halberg Trust who provide equipment and coaching for disabled New Zealanders to get involved in sport.

The Halberg Trust has helped many children fund a trike to enable them to bike with their families or their peers, but you can also try to funding for a trike through the Variety Children’s Charity.

Each region has dozens of philanthropic organisations that are keen to support families for individual needs or group activities, so make sure you have a good look around and see what’s available.

Most importantly, do not be shy or modest to ask and gratefully accept all the help you can get for your family.

 

 

 

 

The STRIVE self-advocacy team had another busy year and even the  lockdown could not stop their work.

STRIVE is a team of people with Down Syndrome who are a members advisory and leadership group who advise and support the New Zealand Down Syndrome Association board, and are ambassadors and advocates for people with Down Syndrome.

Judging by the STRIVE report to the AGM recently, the STRIVE team has developed its skills and influence significantly during 2019-2020.

The team regularly meets for Funshop, which are workshops with different topics, where guest speakers share their expertise with the young ambassadors.

The past year, the meetings covered Research, Advocacy, Writing Reports, Tips for Public Speaking and developing a Succession Plan.

This final subject is particularly important as some of the STRIVE team have been in their role for several years, and may want a change, while it is also important to get new people involved with fresh energy and ideas.

Once Covid 19 started affecting our day to day lives and New Zealand went into lockdown, the STRIVE team started using Zoom meetings.

The group got together on eight occasions between April and June to share their Covid 19 experiences and continue their other work.

Aside from sharing ideas with each other, the group has been very active in the wider community on behalf of the NZDSA.

Andrew Oswin attended the Disability Consumer Consortium in Wellington, Edward Borkin presented to Auckland Timber Industry as well as the Auckland Success in Schools workshops, Erin Smith was a Support Buddy on the Youth Development Camp and Andrew presented at a meeting of Down Syndrome Australia.

The group worked with the Health And Disability Commission on the script for digital resources to help people with disabilities, in which Duncan Armstrong featured as the lead actor.

On the international stage, STRIVE was part of the a feedback group for the Down Syndrome International research on Covid 19, as well being part of a disabled person-led monitoring programme  in Health and Wellbeing by the Donald Beasley Institute.

The STRIVE members have made huge progress as a group but are also proud of the successes they have enjoyed individually.

“On the 13th October 2020 I received and Achievement Award for the outstanding artistic achievement from Arts Access Aotearoa,” said Duncan Armstrong.

“I am taking up a leadership role in the kapa haka group in Invercargill and will be performing alongside other people with Down syndrome from the Invercargill Down Syndrome Group,” said Alexandra Hewitt.

Edward Borkin said will be going flatting which is a goal he has had before he even joined STRIVE, while Caroline Quick is a member of the EGL regional leadership group in Christchurch as one of three disabled representatives.

Caroline is also a member of the Disability Advisory Group for the Christchurch City Council, for which she is paid  a meeting fee.

In the far north,  Erin Smith is a youth leader in the Great Mates Social group.

“I am still a member of the Northlands DSA committee and I continue to enjoy my dance classes.  I have done training workshops at work and I am helping with the induction training at work and doing meet and greets,” says Erin.

Andrew Oswin said he really enjoys being a self-advocate and a member of STRIVE.

“I am happy and privileged and to have made a commitment of service to the Down syndrome community and country of New Zealand.”

Actor Duncan Armstrong stars in a series of new videos released by the Health and Disability Commissioner and the Nationwide Health and Disability Advocacy Service to help people with learning disabilities think about their own experiences with using disability services and their rights under the Code.

There are five videos, each with a different story. The videos look at how Sam, played by Duncan, and his friends use disability support services and how they resolve any concerns that they have.

The videos were produced by Film for Change Aotearoa and made locally in Wellington with Wellington actors, including people who use disability services.

Each video has a closed captions option, and the closed captions and slides have been transcribed into Word documents. Deaf Aotearoa has created New Zealand Sign Language (NZSL) for each video.

 

By John Pike
Where do you work?
Right here at Slaughterhaus – the graphic design company where CHAT 21 is produced.

John on cleaning duties at Lighthouse Brewery

How long have you worked here?
11 months.
How many hours each week?
6 hours.
What jobs do you do at your work?
I do the cleaning in the design studio and in Lighthouse Brewery next door.

John with his boss Dan and colleague Taylor.

How does it make you feel that you have a job?

It makes me feel good.

What do you like the most about your work?
Having a beer at Lighthouse Brewery after work on Friday and getting paid.
What don’t you really like about your work?
Cleaning the floor.
Do you have any other paid or volunteer jobs as well?
I help in the garden at Hohepa.
What would be your dream job?
Beer taster.

Down Syndrome International recently hosted a webinar to provide information and receive feedback about the first international guidelines for educating learners with Down syndrome.

If you missed the webinar but are interested in learning more, you can watch the webinar here.

Down Syndrome International (DSi) has developed these guidelines, using experts and existing research from around the world, to enable teachers to help their students with Down syndrome reach their full potential.

NZDSA National Executive Zandra Vaccarino thinks these guidelines are a game changer and will become an invaluable asset to New Zealand educators.

“We know that educators in New Zealand will welcome this resource as there is a great need for expert guidelines to  teach students with Down syndrome,” says Mrs Vaccarino.

“These new global guidelines have pulled together the best practices available around the world and will facilitate the realisation of the right of people with Down syndrome to an inclusive education and lifelong learning.”

New Zealander Bridget Snedden, Vice Chairperson of DSi says these guidelines have been developed to improve the availability and quality of education for people with Down syndrome around the world.

“We need to raise the expectations among educators of what young people with Down syndrome are capable of,” says Snedden who was closely involved in developing the guidelines.

To download the guidelines, please go to:

https://www.ds-int.org/Handlers/Download.ashx?IDMF=7a4a9546-287d-49c1-8573-888319d7310f 

Some people can’t wear a face mask or covering because of a disability.

The NZDSA have designed these cards to help you in public situations.

The first side of the card is always the same and some people will be happy using it on its own.

Show it to quickly explain that you have a legal reasonable excuse not to wear a face mask.

If you want a non-verbal way to explain more you can double side your card with one of the extra messages. These can be printed or kept on your phone as photos.

YOU CAN PRINT THEM ALL OFF HERE.

 

Dementia is more common in people with Down syndrome than the general population. Liz Evans and Tanya Duckworth review research on why this is the case, along with recommendations for how families can support a loved one with dementia.

The term dementia doesn’t refer to one specific disease but a set of symptoms caused by a number of different brain disorders. Dementia results in a decline in a person’s mental abilities–their capacity to think, reason, and remember.

Most people with dementia will experience changes like:

  • declines in memory, with more recent information or events being harder to remember
  • difficulty concentrating
  • difficulty finding the correct words to say
  • reduced capacity to plan, to pay attention, and poorer judgement
  • feeling less motivated
  • personality and behaviour changes.

When dementia occurs in people under the age of 65, it is called ‘younger onset dementia’.

There are many different types of dementia with different patterns of symptoms. The most common form is Alzheimer’s disease. People with Alzheimer’s disease show progressive memory loss and a gradual decline in other skills. Their brains show changes in the form of a build-up of sticky plaques between the brain cells and tangles within the cells1.

Dementia is not a normal part of ageing.

Normal ageing does mean that the brain slows down, and it is common to find it harder to remember things as we age. However, forgetting recent events and conversations, forgetting the names of family members, and losing skills we once had are not normal at any age.

 

But changes in a person’s memory and thinking skills can also be caused by other medical conditions, many of which can be successfully treated.

Examples include:

  • a vitamin or mineral deficiency
  • a mental health problem such as depression
  • problems with sight or hearing
  • a side effect of new medication, or even a change in how their body deals with existing medications
  • an underactive thyroid (hypothyroidism)

 

Some of these conditions are more common in people with Down syndrome than the general population. So, any time a person is showing a decline in their thinking or memory, or changes to personality and behaviour, it is important to talk to their doctor about it straight away.

 

How common is dementia in people with Down syndrome?

Dementia, particularly Alzheimer’s disease, is much more common in people with Down syndrome than the general population and it tends to occur at a younger age. Scientists believe this is because a gene on chromosome 21 called the amyloid precursor protein (APP) gene plays a major role in the brain changes associated with Alzheimer’s disease. Genes are a code for proteins, and because most people with Down syndrome have three copies of this gene, they get more of its protein1.

 

Different studies have found very different rates of dementia in people with Down syndrome, ranging from under 10% up to 49 years of age, to around 30% for those in their 50s, and over 50% for those aged over 602. One recent study found a rate of just over 50% in those over 60 years3, but another recent study found a rate above 80% in those over 654. he average age for diagnosis is in the mid 50s4.

 

he outward symptoms of dementia do not start for some years after this and somelive into old age without developing symptoms3. So, it is not inevitable that a person with Down syndrome will get dementia but, due to the increased risk, it is still likely.

 

What are the signs of dementia in people with Down syndrome?

In people without Down syndrome, the earliest signs of Alzheimer’s disease are usually memory problems. But in people with Down syndrome, the first signs noticed by carers are more likely to be changes in behaviour and personality, such as increased stubbornness and behaving inappropriately. Other early signs include difficulty paying attention and lower ability to plan, solve problems, and make judgements5, 6.

 

Other changes may include 5, 6:

  • apathy
  • social withdrawal
  • increased dependency
  • confusion
  • prolonged sadness
  • fearfulness
  • repetitive speech
  • getting lost or disoriented in familiar places
  • irritability or aggression
  • seizures for the first time in adulthood

 

 

What is the latest research on dementia in Down syndrome focused on?

Scientists are working in a number of areas to further knowledge about the link between Down syndrome and dementia. Two important areas of current research are regarding diagnosis, and possible future treatments.

Our own research team is conducting the Successful Ageing in Intellectual Disability (SAge-ID) Study. One of the aims of that study is to compare different screening tools and assessments that may be suitable for people with intellectual disability, including those with Down syndrome. A further aim is to look at the factors associated with a higher risk of dementia in this group. People with intellectual disability aged over 40 can participate in the study, including those with or without dementia. This is to ensure a good a mix of those who are healthy and those experiencing declines.

Other researchers are looking at different biological markers that might be able to identify the brain changes associated with Alzheimer’s disease much earlier, even before cognitive symptoms begin. Examples include protein changes in a person’s blood, new types of brain scans, and measuring brain waves through EEG. If such measures could reliably detect brain changes earlier, then this could one day aid in directing specific therapies during the window before symptoms start1, 7. It could also help researchers as they try to develop and test future therapies focused on preventing dementia.

Certain medications can help to slow the rate of cognitive decline in some people who have dementia. However, studies with people with Down syndrome have found inconsistent results about whether these medications are effective, though some case studies suggest they may be for some people8, 9. However, people with Down syndrome may have an increased risk of side effects from these medications9.

Newer research is trying to develop future treatments that could prevent or alter the course of Alzheimer’s disease7, not just address the symptoms. Much of the research on drugs and neurotransmitters (brain chemicals) is done initially using mice. The safety and usefulness for humans then needs to be established.

 

A handful of studies have also looked at whether antioxidants could prevent or slow Alzheimer’s disease in people with Down syndrome10. So far, the results have not found that antioxidants worked to prevent decline8. Instead, results have pointed to the highly complex nature of the brain changes that lead to cognitive decline in people with Down syndrome. Much more research will be needed before scientists can identify specific supplements that may reduce dementia risk in people with Down syndrome.

Are there factors that increase–or decrease–the chances that a person with Down syndrome will develop dementia?

 

There is only a small amount of research about risk factors specific to people with Down syndrome. A handful of case studies suggest that people with atypical forms of Down syndrome may have a lower risk of developing Alzheimer’s disease11. Other studies have looked at the role of particular genes known to influence risk in the general population, but results are not always consistent across studies. Results regarding the potential influence of gender, hormones, and level of intellectual disability have also varied between studies.

 

However, much of what is known about dementia in the general population could also apply to those with Down syndrome. There is a considerable amount of evidence from the general population to support the protective effects of a healthy lifestyle. Research regarding people with Down syndrome is lacking but the World Health Organisation12 recommends that people with intellectual disabilities should focus on similar targets.

 

A healthy lifestyle aiming to reduce dementia risk would include good nutrition, regular exercise, and not smoking12-14. People (in the general population) who regularly do moderate-intensity exercise have a lower risk of dementia. They also have a higher brain volume in areas related to memory, planning, and learning.

The Mediterranean diet has also been found to reduce dementia risk in the general population as has staying socially active and engaging in stimulating activities for leisure, work, or education.13

One of the most important elements of a healthy lifestyle is preventative health care including regular medical check-ups. Good physical and mental health throughout life is associated with a lower dementia risk in the general population13.

People with intellectual disabilities often have undiagnosed or untreated health conditions which could be treated.

Sensory problems and physical disabilities can also compound their health and quality of life.

In the general population, cardiovascular disease is a particularly important risk factor for dementia15.

In general, people with Down syndrome have an overall lower risk of cardiovascular disease than the general population. However, it is reasonable to assume that for those people with Down syndrome who do have risk factors for cardiovascular disease, these factors would increase the risk of dementia. Such risk factors include a family history of heart disease and stroke, having diabetes, low levels of physical activity, a diet high in saturated fats, and smoking16.

 

Obstructive sleep apnoea is also known to increase the risk of dementia in the general population and it is very common in people with Down syndrome. It is possible that this could be an important additional risk factor for people with Down syndrome15. Medical management of obstructive sleep apnoea is based on an individual sleep study.

 

How can families identify the early stages of dementia and differentiate those from mental illness or other problems?

 

Diagnosing dementia in people with Down syndrome can be difficult. The standard tools for assessing cognitive function in the general population are not suitable when someone has an intellectual disability.

What is needed is to compare the person’s functioning to what it was before symptoms began9, but the person’s typical level of function may not be well documented.

As a result, health professionals rely on information provided by family, carers and other people who know the person well, to help come to an accurate diagnosis6. So it is important for the people close to the person with Down syndrome to know the early signs of dementia and to consult a doctor about any changes observed or any other concerns.

The earliest noticeable signs in people with Down syndrome may be behavioural or personality changes. If a person with Down syndrome consults a doctor when these changes are observed, then memory and other cognitive testing can be carried out at regular intervals to help to determine if decline is also occurring5.

 

There are tools available such as the Early Detection Screen for Dementia recommended by the National Task Group in the US. This is a tool that can help you to track your loved one’s skills and any changes in their functioning time. At present, the tool does not provide a cut-off score: rather, it is designed to facilitate talking about any observed changes with a health professional.

 

While families and carers are critical to recognising changes in their loved one, consulting a doctor is essential to determining whether those changes might be dementia or something else. There are other conditions that may look the same as dementia, many of which can be tested for and treated.

 

What can parents/carers do to prepare for the management of dementia in their loved ones?

If your loved one develops dementia, the keys to supporting them will be early planning and working well with their doctor and other professionals. So encourage your loved-one to find an attentive doctor they feel comfortable with, and to continue to see that doctor for annual health checks.

Early planning for any transitions begins with getting a diagnosis as early as possible. A baseline assessment of their skills when healthy is helpful. Use the free screening tool, and, if resources permit, arrange an assessment with a psychologist or psychiatrist.

Current recommendations are that people with Down syndrome have a cognitive assessment around age 30, to establish their normal level of functioning before declines begin and again at age 4017. But if they start to show declines, the assessment could be repeated annually5.

 

Build as much of a support network as possible around the person with Down syndrome. If dementia is diagnosed, talk with the person with Down syndrome about who is in their life and who they would like to invite to be involved in their care. Wherever possible, include the person as early as possible in the planning process. This may include discussions of end-of-life care18.

Support your loved one to understand their diagnosis so that they may participate in this planning. An easy-read fact sheet with pictures can help (see the resources links below). Find out what your loved one’s preferences are regarding care options, end-of-life planning, and what is important to them for their care18.

Families can facilitate holding onto items, such as photos and holiday souvenirs, which may one day serve a purpose in a memory box or life story. These are tools which can assist someone with dementia who is beginning to lose their memory. They can also aid communication between a person with dementia and others, and may help paid workers to understand the person better18.

Look into available services. People with Down syndrome have the right to access mainstream health services and aged care services. Those with younger onset dementia (before the age of 65 years) can also access aged care services if they have a diagnosis or suspected dementia. The National Younger Onset Dementia Keyworker Program can be accessed before a formal diagnosis is made. Of course, people with Down syndrome and dementia also remain eligible for disability-related supports. A range of allied health professionals may be involved in the care of someone with intellectual disability and dementia to promote their wellbeing.

 

As dementia progresses, the care goal needs to shift from supporting independence towards providing care and eventually palliative care 19, 20. Many people with Down syndrome and dementia may want to remain where they are living and their families may want this too21. However, if and when their care requirements can no longer be met in their current place, options will include transfer an aged-care facility or another disability service. Long-term planning for such transitions is helpful.

 

Dr Liz Evans is a NHMRC-ARC Dementia Research Fellow and Tanya Duckworth is a research assistant with qualifications in psychology and cognitive neuroscience. They are from the Department of Developmental Disability Neuropsychiatry (3DN), within the School of Psychiatry at the University of New South Wales in Sydney.

Resources

An easy read factsheet is available from the Alzheimer’s Society (UK) here:
https://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=1092

The screening tool recommended by the US National Task Group is available from this site: http://aadmd.org/ntg/screening

Alzheimer’s Australia has made a video about dementia in people with intellectual disability. It can be viewed here: www.dementia.org.au/videos/collections?playlist=IntellectualDisability

 

If you would like further information, or would like to talk to us about the SAge-ID study, please phone Tanya or Liz on (02) 9931 9160 or email us at [email protected]

 

 

References:

 

  1. Wilson, L., T. Annus, S. Zaman, and A. Holland, Understanding the process; links between Down Syndrome and dementia. Intellectual Disability and Dementia; Research into practice. London: Jessica Kingsley Publishers, 2014: p. 34-52.
  2. Sinai, A., T. Chan, and A. Strydom, The Epidemiology of Dementia in People with Intellectual Disabilities. Intellectual Disability and Dementia: Research into Practice, 2014: p. 24-33.
  3. Margallo‐Lana, M., P. Moore, D. Kay, R. Perry, B. Reid, T. Berney, and S.P. Tyrer, Fifteen‐year follow‐up of 92 hospitalized adults with Down’s syndrome: incidence of cognitive decline, its relationship to age and neuropathology. Journal of Intellectual Disability Research, 2007. 51(6): p. 463-477.
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  12. World Health Organization, Ageing and Intellectual Disabilities – Improving Longevity and Promoting Healthy Ageing: Summative Report. 2000, World Health Organization: Geneva, Switzerland.
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  15. Wilcock, D.M., F.A. Schmitt, and E. Head, Cerebrovascular contributions to aging and Alzheimer’s disease in Down syndrome. Biochimica et Biophysica Acta (BBA)-Molecular Basis of Disease, 2016. 1862(5): p. 909-914.
  16. Trollor, J., C. Salomon, J. Curtis, A. Watkins, S. Rosenbaum, K. Samaras, and P.B. Ward, Positive cardiometabolic health for adults with intellectual disability: an early intervention framework. Australian Journal of Primary Health, 2016. 22(4): p. 288-293.
  17. Dodd, K., S. Coles, T. Finnamore, T. Holland, S.K. Gangadharam, M. Scheepers, . . . S. Wilson Dementia and people with intellectual disabilities: Guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia 2015.
  18. Towers, C. and H. Wilkinson, Planning ahead: Supporting families to shape the future after a diagnosis of dementia. Intellectual Disability and Dementia: Research into Practice, 2014: p. 161-182.
  19. Carling-Jenkins, R. and C. Bigby. Supporting people with intellectual disability and dementia: A training and resource guide PowerPoint presentation for managers of disability organisations.; Available from: http://www.karingal.org.au/media/529677/day_one_-_dsws_-_karingal_theme.pdf.
  20. Jokinen, N., M.P. Janicki, S.M. Keller, P. McCallion, and L.T. Force, Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. Journal of Policy and Practice in Intellectual Disabilities, 2013. 10(1): p. 1-24.
  21. Carling-Jenkins, R., C. Bigby, and T. Iacono, Family experiences of supporting a person with Down syndrome and dementia in Australia. Intellectual Disability and Dementia: Research into Practice, 2014: p. 145-60.

 

 

 

 

by Coen Lammers

As life expectancy of people with Down syndrome is increasing, the number of them developing dementia is also growing.

The extra chromosome that causes the developmental and health issues associated with Down syndrome also carries the Alzheimer’s genes, so people with Down syndrome often develop dementia at an earlier age.

Research shows that about one third of people with Down syndrome over 50 years develop dementia, which is creating new questions and challenges for families, support workers and health services.

Two leading Australian scientists analysed all the available research around this subject which they published last year.

Currently in New Zealand, there is no coordinated effort from the health authorities to prepare the sector for the ageing population with Down syndrome, so people on the frontline are left to come up with their own solutions, in their own community.

Hohepa Canterbury in Christchurch provides residential care and other services for people with intellectual disabilities and may be the only organisation in the country with a dedicated dementia unit for people with Down syndrome.

General manager Arnah Trelease explains that people with Down syndrome and dementia need specific care and staff need specialist training, which Hohepa originally was not able to offer.

“When the first people presented with dementia, they had to move to rest homes, where sadly they would not last very long and usually pass away within six months,” says Trelease.

Moving their clients away from Hohepa, however, was contrary to the commitment the organisation had made to its members that they could live out their days in their own environment.

“Dougie Brown was one of our original clients back in 1964 and when he started developing dementia, his mother Jendy refused to let him go to a rest home and reminded us of our commitment to our people.”

Hohepa considered its options and decided to turn Dougie’s house, Rose Cottage, into a dementia unit within Hohepa.

“We had to move Dougie’s house mates to different houses on our grounds, which got some resistance from the families, but they now tell us that we made the right decision,” says Trelease, who adds that the establishment of the dementia unit was only possible thanks to close collaboration with the Canterbury District Health Board.

“Tracey Hawkes from the CDHB has trained our staff in the Walking In Another’s Shoes programme to give them dementia related skills and helped us set up Rose Cottage.”

Juliet Nelson is the Integrated Support Manager running Rose Cottage and she says the big difference with a normal rest home are the staffing levels and the fact that people stay amongst their own people in a familiar environment.

The five clients who currently live at the cottage have two staff members, which is a significantly higher ratio than rest homes, which enables the staff to engage with the clients more one-on-one and find activities that fit the stages they are in.

“They remain part of our community and live as a family. They can watch the meals being prepared and sit around the table to have dinner,” says Nelson.

Hohepa has clients ranging from 6 to 82 years of age. “So they should not be moving out at the most vulnerable stage of their lives,” says Trelease.

“They should be able live out their lives in a familiar environment,” says Trelease who adds adds that the demand for dementia care is increasing and Hohepa are about to open a second unit.

“It feels like we’ve got a flood coming, and not just here. Other providers are contacting us because they may have one or two people getting dementia but are not able to set up their own units, so I think we will need a lot more collaboration in this space,” says Trelease.

Geraldine Whatnell on the other hand feels that the flood is more likely to be trickle.

Whatnell is part of the National Dementia and Intellectual Disabilities Steering Group and the first qualified Nurse Practitioner Dual Disabilties in New Zealand, specialising in intellectual disabilities and/or Autism Spectrum Disorder and associated mental health needs.

She says the most recent research indicates that the numbers of people with Down syndrome developing dementia may not be as high as assumed a few years ago.

Whatnell says he numbers may be inflated because many people with Down syndrome are incorrectly diagnosed as having dementia.

“Someone may present as being confused or off their food and doctors often go straight to dementia because they see someone with Down syndrome. In many cases, however, there could be other health reasons that can be easily reversed,” says Whatnell.

She says that people with Down syndrome are often diagnosed too late because they do not have the language skills that indicate any changes.  “So caregivers and health providers need to look for other indicators.”

The early warning signs for dementia is often epilepsy and starts presenting itself in the late 40s.

To help the doctors with their assessment, Whatnell hopes one day soon every person with Down syndrome will complete a baseline test when they are around 30 years, the Baseline Observation of Functioning For People with Intellectual Disabilities (BOFIID).

“And once you have that baseline doctors can compare those data when that same person presents later in life,” says Whatnell, adding that early diagnosis can lead to better support, better quality of life and less anxiety for the families.

To get a clearer picture if there is any onset of dementia in their 40s, caregivers can also use another effective screening tool, the Dementia Screen Questionnaire for Individuals with Intellectual Disabilities (DSQIDD).

Unfortunately, the Ministry of Health does not have data on how many people with Down syndrome in New Zealand have dementia.

Toni Atkinson, Group Manager Disability Support Services at the Ministry of Health, says the Ministry is aware of the misdiagnosis issue, but hopes the DSQIID baseline will help health professionals and support workers to notice any earlier decline in functioning.
“New Zealand has a growing and ageing population and we recognise that people with Down syndrome and their families will also be looking to the future and what supports are available.”

By Coen Lammers

As the New Zealand Down Syndrome Association is heading into its 40th year, an effective  and strong representation of the Down syndrome community is getting more important with each year.

The NZDSA was founded in 1981, initially to support parents caring for a person with Down syndrome, but over the years this role has expanded rapidly to become a multi-faceted support and advocacy organisation.  
The volunteers and part-time staff that keep the wheels of the NZDSA turning are now recognised as key stakeholders in the most crucial discussions and decisions impacting on our community at a national and international level.
“We are recognised as an important parent organisation and a significant part of our work now involves stakeholder meetings that involve policy change and advocacy at Government level,” says Zandra Vaccarino, the National Executive Officer of the NZDSA.
Zandra, President Kim Porthouse and other members of the National Committee are in regular contact with the organisations that play a vital role in the lives of people with Down syndrome, like the Ministries of Health, Education, Disabilities, and Social Development.
“In some cases, we just keep advocating for years until they start listening to us,” says Zandra, who has been the face of the NZDSA at Government forums for the past 16 years.
The NZDSA also has a long representation on the National Screening Unit to discuss the practical and ethical challenges around increased screening for Down syndrome, while Zandra also works with Human Rights Commission, the Health and Disability Commission and the Disability Transformation Steering group.
STRIVE self-advocate Andrew Oswin and committee member Averill Glew also represent a strong NZDSA voice in the Disability Consumer Consortium, which represents all key stakeholders in the disability sector.

NZDSA staff meet with regional representatives.


“The NZDSA has a big voice in all these advisory and decision-making bodies, but it is vital that we represent everyone in our community. We encourage every person and family with Down syndrome to become an NZDSA member, so we know exactly who we represent in those discussions,” says Zandra.
“And the more people we represent, the bigger our voice is and the harder it is for any agency to ignore us.”
Unfortunately, the Government does not keep any comprehensive records of people with Down syndrome in New Zealand, who they are, where they live or what challenges they might be facing, individually or collectively.
“We only have records of how many children with Down syndrome are born in hospital, which has been roughly between 52-58 each year, but after that it becomes guess work. So we are really working hard to build our contact list, so we can find out exactly where our community is and what we can do to support them. 
“That’s why signing up to the NZDSA through our website (www.nzdsa.org.nz) is so important, so we can understand what you need and give you the information that is relevant to your situation.”
Zandra admits the limited resources of the NZDSA makes it difficult for the national body to provide advocacy support on an individual basis when parents need support dealing with a school, a doctor or an agency, but the association will know where families can get local support.
“We may not be able to go into a school with a parent, but we provide them with local contacts in our own community, a regional representative, or sometimes IHC.
“In many cases, however, we are able to provide parents with tips and strategies to upskill the parent, so they can deal with the issues themselves. Being able to empower a parent is one of the most powerful parts of our job.”
The NZDSA was created to support parents, which is still at the heart of their mission, but these days the focus has also shifted to empowering the person with Down syndrome and teach them how to advocate for themselves.
The NZDSA organises regular self-advocacy workshops in which its members receive specialist training to teach them about their rights and how to advocate for their own rights, as well as others.
The STRIVE group of self-advocates includes a six-person Advisory and Leadership Group who provide invaluable advice to the National Committee, as well as nine other self-advocates who are gaining new skills to potentially move into leadership roles.
“These people are the most powerful ambassadors of our community. They are all confident, articulate and go out in their own communities to represent the wider New Zealand Down syndrome community,” says Zandra.
Many of the STRIVE members have also taken part in the annual NZDSA youth camps, either as participants or as a support person.
The Youth Camp at the Sir Peter Black Marine Education and Recreation Centre in Long Bay is an annual highlight on the NZDSA calendar.
“Each year, the NZDSA invites young people nominated by each region to join a weekend of adventure and fun,” explains Zandra. 
“At the camp they make new friends, learn new skills and build their confidence.”
The Youth Camp is supported by volunteers from each region, which enables these regional representatives to share experiences and become part of the national network.
The camp alternates between a camp with more independent young people who are happy to travel without their parents, while every second camp focuses on young people with higher needs who require regular support from a caregiver.
“But we really want the camp also to be a real respite weekend for those parents who are on duty 24/7.  Where possible, NZDSA volunteers take over the care of the youngsters during the activities, so the parents can relax, go out for a coffee or  wine, and participate in other activities for the parents, as well as sharing experiences with other parents who have children with very high needs.”

The NZDSA ball in Auckland in December.


Aside from the work by the NZDSA, the Down syndrome community is also fortunate to have strong local support groups in many regions that provide boots on the ground for support, advocacy, social contacts and information.
The NZDSA committee is made up of representatives from the six zones, who liaise with their own regions and representatives from the local Down syndrome groups.
The committee has regular meetings, in person or by Zoom, to discuss current issues the NZDSA needs to be involved in and to receive feedback and ideas from the regions.
Zandra says that the interactions are a two-way street, where the NZDSA in some cases refers inquiries to the regions, while in other cases the regions contact the NZDSA to get the support they need. 
“Our National Administrator Linda te Kaat takes many of those calls. We call her Detective Linda because if she does not have the answers, she will keep digging until she has found the best person or organisation to help out,” laughs Zandra. 
“And we don’t just give out a number, but we will contact that organisation first to find out if they are the best people to help our members.”
Linda te Kaat also manages a large pool of resources that are available for NZDSA members, like Numicon kits, educational DVDs on several themes, and distributes the new parent packs for new parents of children with Down syndrome.

Zandra Vaccarino with her son Vincent and his wife Rachel.


Aside from its advocacy and information roles, the NZDSA has been organising or has been part of numerous workshops on a host of issues like health, education, ageing, self-advocacy, employment or human rights.
“In some case they are just for our community, but in many workshops we work closely with other organisations in the disability sector. We think it is important for us and our members to build communities of people who face the same challenges,” says Zandra.
Those connections are not just restricted to our shores, as the NZDSA also collaborates with international groups like Down Syndrome International (DSI) and Inclusion International. The NZDSA staff are in regular contact with their key counterparts overseas, especially in Australia. 
The NZDSA staff take part in virtual conferences, including the Asia Pacific Down Syndrome forums, and if the NZDSA is able to secure funding support, they attend the World Down Syndrome Conference every two years in person, to share the latest research and developments with the regions and to continue building international connections.
In the lead-up to World Down Syndrome Day, the NZDSA works closely with DSI to support the annual theme the international community chooses for that year. 
“Most years we have created a special video on that theme that we distribute to the community, to media and through our social media platforms to celebrate people with Down syndrome and raise awareness around New Zealand,” says Zandra.
The NZDSA Facebook page has a large following, inside and outside the Down syndrome community, but is just one of several communications tools it uses to communicate with its own families, as well as other stakeholders like educators, Ministries and health professionals.
“The NZDSA recognises that communicating and connecting our community is the most important part of our role, so we have invested in a part-time communications advisor, who is also the editor of our quarterly journal CHAT 21,” says Zandra.
“He works closely with our Social Media Officer to connect through social media and put out a regular E-newsletter to all our contacts, as well as looking for media opportunities for stories around Down syndrome,” says Zandra.
She explains that the NZDSA uses those communications platforms to share their own news, but also support the regions by promoting regional news and events by sharing it with all their contacts.
“All the different regions are doing an amazing job helping our families, and are often best placed because of their local connections, so our role is to provide a connection between the regions, support them where we can, and represent them at a national level.
“But we are only as good as the feedback and support we get from everyone in the regions. “So we are working hard to find and connect with every family in New Zealand, be more visible to our community, so we can represent them more effectively.”

New Zealand families share their stories about welcoming a child with Down syndrome into their families.