Fitbit Attempting To Add Greater Health Indicators To Fitness Wearables

Wearables go hand in hand with daily fitness duties for many, but what if there was a way to use these devices to measure better metrics for long term health?

This, in a hard to explain a nutshell for a fitness dummy such as myself, appears to be exactly what Fitbit is attempting to pull off with their new Active Zone Minutes (AZM) feature.

Available on all Fitbit wearables, the AZM is a new form of heart metric that goes beyond general step activity to provide the user with greater acctivity targets for improved health and well-being.

According to Fitbit data scientist Aubrey Browne, understanding the data behind AZMs and improved understanding of health is key to users.

“Our cross-sectional analysis shows a clear association between the acquisition of AZMs and our users having the tools they need to improve their health. Now that the feature is available for the masses, we are excited to use this physical activity metric further in longitudinal analyses,” Brown said.

But what does that actually mean? Basically, an AZM is a measure of active minutes recommended to the user, a.k.a how long they should be doing different types of physical activity based on their current health, age. and lifestyle statistics already in use across Fitbit apps.

The science that has emerged to sit behind the AZM is interesting.

After launching AZM on wearables in back in March, over 20,000 Fitbit users data showed that the more AZM’s a user logs each week (through increased exercise and activity), the better long term health indicators a user sees. This is based on lower Resting Heart Rate (RHR) and Body Mass Index (BMI).

For dummies like me, think of it in these simplistic terms:

With the AZM feature enabled on your Fitbit wearable, and assuming you’re engaged in a certain amount of physical activity (whether that be Yoga, going for a run, dance class etc), you’ll soon be presented with a metric that can predict certain long term health indicators based on individual data.

I know, it’s all ranging into the territory of over the head mumbo jumbo for those who simply want to be a bit more active and lose a bit of weight.

But at least Fitbit are doing what they can to track what you’re currently doing from more than a purely data collection perspective and are entering into greater health tracking indication.

Ministry of Health Offers Little Assurance To Disabled Community

The Ministry of Health may have fronted, but the detail on what’s next for Disability Support Services was light and uncommitted during the latest round of conversation.

During a live stream hosted last Thursday, the Ministry of Health shared its learnings and attempted to get close to something of a vision for the future after it held public events around New Zealand that engaged with the disability community. Continue reading Ministry of Health Offers Little Assurance To Disabled Community

Examining DPO Engagement With The Disability Community

Are Disabled People’s Organisations doing enough to ensure that the voices of New Zealand’s diverse community of disabled people are being heard and represented?

Disabled People’s Organisations, or DPO’s as they are more commonly known, are representative organisations governed by disabled people. In New Zealand, the size of the eight recognised DPO’s vary, but primarily their existence and mandates are based on representing the voice and views of their members. For example, the Disabled Person’s Assembly NZ aims to engage the disability community, with a view to listen and articulate the views of the community when working alongside decision makers.

But in reality, are disabled people satisfied that the organisations representing them are really listening to and hearing their views?

To try and understand this question a little more,  I created a poll on Facebook asking members of the disability community if they felt that DPO’s were generally doing enough to ensure that their voices were being heard and represented.

Out of a total of 34 votes submitted, 26 people said that they felt DPO’s could do more to hear and represent the views of the disability community. Just 2 votes came in saying yes, they were satisfied, whilst a further 6 people argued that with more funding, DPO’s could do more for disabled people.

Granted, we are dealing with a very small number of people who voted in that poll, and there is every chance that the numbers could swing dramatically in the opposite direction if more people had their say. Many DPO’s also generate regular surveys asking their members for feedback, and that feedback may tell more of a whole story. 

The Lack Of Funding For A DPO

The problem for many DPO’s is the amount of funding available not being sufficient enough to achieve all the goals it has. This is an argument put forward by many, and whilst it is familiar, it does have a lot of merit. Lobbying Government, be that local or national, for example, can be a time-intensive process and many organisations don’t have the time to put as much effort into pushing decision makers to further consider the rights of disabled people when it comes to new or existing policy. 

Holding local community forums and advertising them costs money as well, but some DPO’s are lucky enough to have forged connections with other community organisations in the disability space and have regular opportunities to hold their events using their buildings free of charge. Further costs for DPO’s can include travel and accommodation expenses for executive committee members when on official business on behalf of that DPO, and further expenses that cannot be forgotten is the costs to rent out spaces in buildings and pay all the staff working at national and regional levels.

Revenue streams for DPO’s vary, but memberships and donations often play a big part in balancing the books year to year.

Making Changes, Taking Responsibility For Delivering A Quality DPO

It is absolutely vital that the voices of disabled people and families, as well as the organisations working alongside them, are heard at the local level. But this, in all reality, is a two-way street. Many people with experience working within DPO’s argue that the community itself doesn’t engage enough with their elected leaders by attending local forums and national events, spreading the word about a DPO, or generally caring about what’s going on.

As a result of this, once regular forums see a lack of continued support from the community, slowly becoming stale, leading to disillusion on both sides.

That’s where two things become ultra important moving forward. Firstly, how local leaders engage with communities. These leaders need to ensure that regular meetings are held and that people know about them, and in some cases across New Zealand, this is not happening.

In the case of the DPA in the Waikato, Meetings are canceled suddenly, often without much notice or reasoning behind such other than the appropriate people needing to be somewhere else.

Advertising and information sharing on numerous modern platforms is essential also, and this is a national problem, not just for DPO’s, but for most organisations within the greater disability sector. Rather than relying on the traditional methods of monthly newsletters, word of mouth, and occasional Facebook page updates to engage with members, DPO’s need to find more ways to use new platforms such as Instagram for example, or embrace the live streaming video opportunities presented by YouTube, Facebook, and Twitch.  

Imagine a weekly live stream with an NZSL interpreter that is also presented as a podcast. This would allow a DPO to simultaneously share the latest news that would concern their membership, as well as have in depth and engaging conversations about issues that their members raise. Or, if you wanted to stick with holding local and national forums in the way that they are currently presented, at least record and advertise what happened at said forum in a way that is accessible to all disabled New Zealanders, and the wider public.

Secondly, there is a responsibility on the memberships of DPO’s as well. During conversations ahead of writing this blog, some did raise with me their frustration and disillusion with the lack of engagement by local communities when it comes to attendance at events that don’t include a Ministerial visit or big announcement of some kind.

Often, one person said, it was “the same old faces and the same old discussions at the same old events with tea and biscuits”.

Conclusion

The aim of this blog wasn’t to rubbish DPO’s, nor was it to make excuses for their occasional lack of transparency. The aim of this blog was to have a fair and frank discussion about a question that needs more attention placed on it.

We started out the blog by asking that question, are DPO’s doing enough to ensure that the voices of New Zealand’s diverse community of disabled people are being heard and represented?

Regardless of the answer to this question, the discussion should be about the roles, accountability, responsibilities, and most importantly, the outcomes that DPO’s are delivering for disabled New Zealanders at all levels. It doesn’t take a whole lot of funding to listen to people, nor does it take a whole lot of funding to discuss that invaluable feedback in the boardroom. 

Resources Used In This Blog:

Michael Pulman is a Hamilton-based writer, content creator, and public speaker. Michael has a strong interest in disability rights in New Zealand and in 2016 was a recipient of the Youth with Disability Award. You can get in touch with Michael via email at mikepulman91@gmail.com 

The Realities Of Managing My Own Disability Support

After nearly two years of being the employer and client of my support staff, the lessons I’ve learned along the way were ones that I was completely unprepared for, and other disabled people may be too. 

Support for disabled people to learn about how to be good employers is going be a critical aspect of the new system which prototypes in the MidCentral beginning this October. Some aspects of that new system have already been practiced in the Waikato under the Enabling Good Lives demonstration, and I can say that for myself personally, I would have benefited greatly from some hands-on training prior to becoming an employer of my support staff.

Not that people actually have to take on this role if they don’t want to, they will have a choice about that, and I suspect that many will leave the direct managerial responsibilities to a third party. In a lot of cases, that may be a wise decision because being the direct employer does come with a lot of time requirements, and disabled people who choose to go into the new system actually want to spend more time focusing on other things.

There will be options to have a provider manage all the day-to-day HR requirements, including payroll and the hiring/firing aspect. You can also choose to have something of a hybrid of both, where you or your family can manage the money side of things and just pay a monthly invoice to the provider.

Like others in the Waikato during the EGL demonstration, I was in the unique position to have experienced the realities of self-managing using both of these approaches.

When I first transitioned to living independently, I hosted my funding in a bank account but chose to have a provider manage payroll, rosters, and the hiring of new staff. Six months after doing things that way, I transitioned away from a provider and took on the direct employment of staff, which included drawing up contracts, negotiating pay rates, organising rosters, and doing payroll every fortnight. 

Each has its own pros and cons, and it will come down to the personal preference of disabled people and families based on what is important to them. Many don’t want the hassle of taking on the responsibilities of being an employer, they just want to be in control of where and when the supports are delivered.

But at what cost? 

When I was using a provider, I found that it wasn’t always as simple as saying I wanted X, Y, and Z on this particular week. When you couple that with the costs that providers will charge for their own overheads, often it can end up being slightly more expensive per fortnight than it would if people took care of all the management themselves. 

The difference wasn’t major but it was enough for me to justify making the leap to being an employer.

But the struggle with that is learning about the responsibilities that being an employer presents, including the negotiation aspect and the complexities of employment law. In my case, I didn’t feel adequately supported to make that transition but it was one I needed to make nonetheless due to the need to remove the impacts on the budget that the overheads of the providers were having.

Part of the issue, as always, is ensuring that disabled people and families are informed about what services are out there. For example, in the Waikato there is a company called FuturesNZ that can help with employment networking and solutions. I heard about them through my Connector/Tuhono, and there are also plenty of resources online that can help with building employment contracts.

Disabled people who choose to be employers must be equipped with everything they need to know before making the transition into what is a position that comes with some serious legal ramifications if it goes wrong. Because when it does go wrong, and I know this from personal experience, the legal costs will come out of your support budget, therefore having the potential to impact directly affecting your ability to pay your support workers.

This is where things like capability funding for groups of disabled people and families become important, and it’s great that this will be available in the MidCentral during the prototype. It would be great to see a series of workshops that provide that hands-on employer training and advice for disabled people and families who choose to take the leading role in the day-to-day support.

The Realities Of Managing My Own Disability Support

Apart from the gigantic learning curve, my experience being directly responsible for the employment and management of my support staff has been a rewarding experience.

The important thing to remember is that the people who support you are just that, people, and they’ll all bring different skill sets to the table. They’ll have days where they exceed your expectations and days where they may not meet them, and how you manage all the different factors of the employment situation is ultra important because all these factors contribute towards what can be an incredibly vibrant or terribly toxic working relationship. Another big lesson I’ve learned is about the importance of being a good communicator and having the ability to have those tough conversations when required. 

 

The Whole Of Life Approach To Supporting Disabled People

If System Transformation is to truly aid disabled people toward achieving a better life; the care aspect of support cannot be the overarching factor of the individual support package.

Make no mistake about it, degrees of need vary and different support packages will provide different things for different people in the new system. This variety will be one of the key learnings during what is promised to be a “try, learn, and adjust” approach, but before rollout, and well after, disabled people should be encouraged to approach their new support packages in different ways.

One of those ways could be to look at care requirements and how they are delivered as one of the most basic aspects of the entire setup. Yes, I just simplified it and used the word basic, in a system where even now, getting support provided is anything but.

If we are truly talking about using an approach to support that builds on people’s aspirations and gives them the autonomy to do what they want to do, then surely the delivery of care support (whatever that looks like) sits at the bottom and is one of the basic features toward achieving everything else.

For example, let’s look at someone with a physical disability who may come under “very high needs”. Let’s call this person Johnny.

If Johnny wants to study part-time three days a week in the morning, work two days a week in the afternoon, and hang out with friends and family on the weekends, then having his care needs (shower, dressing, home help etc) has to be in place in the first instance, right? None of the other things will work if the core care aspect is in place first, because Johnny needs to be able to get out of bed at 5.30am – 6.00am in order to make it to his class at 8.00am, Johnny needs transport to get to and from work, and he may choose to have a support person with him during all three of the things mentioned above, even when hanging out with friends and family because he may have additional needs when it comes to feeding etc. 

Point being, whatever Johnny needs in order to feel most at ease, he may choose to use a support worker rather than natural supports for some aspects of his needs, so then the support package needs to cater for that.

My idea of this approach is certainly nothing radically revolutionary compared to what has been discussed prior to now. The phrase “whole of life approach” has been used many times in the past when discussing new models of disability support. Enabling Good Lives used it, Individualised Funding providers used it, and most notably, Dr. Mark Bagshaw used it in his brilliant paper discussing support reforms back in 2008.

What’s more, this term has been one of the underlying values behind many of the roundtable discussions amongst sector leaders and advocates in the buildup to DSS System Transformation (due to launch in October) in the MidCentral.

DSS Transformation Focuses More On Disempowerment Of Disabled People

For too long, disabled people and whanau have been disempowered by two factors, community, and system.

Community (both the mainstream and the disability community) expectations, ideologies, and power struggles act as barriers just like the physical access issues in the built environment do. The system equally places barriers in front of disabled people because they can’t get adequate levels of support to be able to do the things they want to do, including in education during their most critical development years.

But there is no use in barking on about the mistakes of the past, or is there?

Dr. Bagshaw wrote that one of the biggest mistakes that have plagued disabled people has not been from a lack of investment or effort, but more so, how that investment and effort has been applied. What Dr. Bagshaw also eluded to in his paper was that a “Whole Of Life” business model that addresses infrastructure barriers, community expectations, and disempowerment was required.

Back in New Zealand and during a time when DSS is about to undergo its biggest transformation in history, the primary focus appears to have been addressing the disempowerment that disabled people face. Perhaps there is room for more work on infrastructure (including Universal Design) in the future, but given that the DSS project is under the scope of the Ministry of Health, the depth of reach is somewhat limited.

The Whole Of Life Approach To Supporting Disabled People

My idea of the “Whole Of Life” approach would see various recourses, including Maslow’s Hierarchy of Needs, fully realized under the new system of disability support. Like anyone else, disabled people’s morality and fulfillment matters, and that needs to be one of the core approaches to support, with less focus on the size of the financial investment.

System Transformation will rollout in the MidCentral region of New Zealand from October 1st.

Can The Disability Community Please Talk About Sex?

Two years ago, I began writing about sex in terms of the disability context. My learnings since have continued to teach me that, in New Zealand anyway, the disability community remains in a state of discomfort when it comes to sex.

Sex is a normal, but most importantly, achievable part of all our lives. Whether that be with a partner and taking place in a relationship, or with an escort in a hotel room, this is a normal part of life that disabled people can, and do, partake in. But the road toward this is often filled with such alarming excuses as to why it can’t, or shouldn’t happen, and this is the very thing I am trying to challenge in the disability community, and also, outside out of it.

There are already too many stigmas placed upon disabled people, including sexual stigmas, but I want to challenge anyone who is interested in challenging those stigmas, to go ahead and challenge them. If we are all about liberating disabled people on a global scale, then we can’t pick and choose what we perceive to be achievable and healthy to be having discussions about when it comes to disabled people. Isn’t absolutely everything, regardless of your morals toward it, open for discussion and activism?

Before we get into the blog, I want to start by telling you all something that you should know already:

Every day that you wake up, open your eyes, and take a breath is a day that you should feel fortunate because many who came before us failed to make the change they wanted whilst the had that very same privilege.

My name is Michael Pulman (of course, you already knew that), and the words above mean more to me now than they ever have before. It’s easy to get fed up, to say you want to quit, and to compare yourself to the situations of others. It’s also easy to overthink your own place in this world and to worry about how’re your going with that. Most of us have a social media account of some kind and we are connected to others, so that means, anything and everything we put out there will be seen, and likely, reacted to by others.

This reality for many of us can lead to fear, and this can often be the direct cause of us staying away from entering into any sort of dialogue about certain subjects.

Take the disability community for example, where a more edgy subject like sex is often spoken about in hushed tones. When I say “a more edgy subject like sex”, I almost scoff at the words I’ve just written because it all seems so crazingly pathetic to me. Sex, if we are talking about intercourse, isn’t just a natural (and hopefully pleasurable) part of life, but the whole liberation of sex and the activities surrounding it have become an accepted part of the modern pop culture.

Disability Representation and Discussion in Sex is Needed

Now, the issues facing equality for disabled people are many, and sex certainly isn’t the highest on that list in terms of priority. In fact, discussing sex and creating opportunities for disabled people, to access sex services as an example, is not even on the priority list at all. To me, that is both a terrific shame but also a complete non-surprise. It is a shame because sex (whatever that means to you and yours), is something that everyone, disabled or not, should have the opportunity to both talk about, and when the time is right, experience in an enjoyable and safe way. It isn’t a surprise, however, that sex for disabled people if often a difficult subject, because there are so many other factors at play that can place some big barriers in the way of the person having a sex life. Barriers including privacy, physical, sensory, and permission (yes, I just said that) just to name a few.

As a wheelchair user, I face barriers in my own sex life. Before entering a relationship and experiencing a fairly active sex life, I knew just about nothing in regards to my own sexual abilities, desires, or even if/how I would be able to “perform” in the bedroom. All I had to go on was the help of a few friends, but more so, the determination that when my time came (yes, I get the pun), I would do everything I could to ensure that it was the best experience possible.

I imagined my first time would be with a girlfriend, or a close friend, perhaps even a fuck buddy. But no, my first time came with a hired professional, an escort. To this day, I have absolutely zero regrets about that decision to pay to lose my virginity. Never have, and never will. 

Well before alll of that, I always had a burning desire to try and encourage as many disabled people to talk about sex whatever that means to them.

Cabinet Paper for new Disability Support System released

The Cabinet Paper detailing high-level design for a new Disability Support System has been released by Nicky Wagner – and it makes for an interesting but not too surprising read.

Wagner, the Minister for Disability Issues, announced that changes to the DSS system were incoming earlier this year. Today, the first details of the cabinet paper have been released, and a new funding model aims to reduce assessment hurdles for disabled people.

“Disabled people will experience a real and meaningful difference with the new system. There will be a lot less red tape, more choice about the support on offer, and a range of easy ways to find information.”

The new system is set to include an information hub that provides people with various ways to make contact and be contacted. That hub will also be digital and can be accessed on smartphones and tablets. For those not wanting face-to-face contact; communication can occur via phone or email as a preference.

The new funding model will reduce assessment, therefore taking less time to implement, and is promised to give greater flexibility to users.

Personal information is managed by disabled people and their families – and the monitoring of progress will reduce compliance and works under the amount of funding each person receives.

The first roll out of the new system won’t occur until July 2018 in the MidCentral region – but that is dependant on how much progress is made during the detailed design process.

More to come.

Inadequate Disability Supports stretches way past simple dollar value

For anyone receiving Disability Support of any kind – it goes way beyond just the dollar value and the assortment of the different services. That’s why support services need to remain, and they need to suit the needs of the individual.

Whether it be a full-time caregiver, or just a supportive friend helping a disabled person in their community, what gets provided is often invaluable.

If they work well, supports can enable people to achieve goals important to them, or at the very least, put them into a position to do so.

So, that’s why service cuts in New Zealand, and around the world, can have such a bad impact on people.

The damage to the routine and structure of those peoples’ lives goes far beyond the care side of things as well; it actually limits and sometimes takes away access to existing support networks and work opportunities.

But it’s a worldwide problem that stretches far beyond New Zealand.

The ‘upper tops’ in world Governments simply don’t grasp just how important a continual and simple support structure is to people with disabilities.

If change is ‘giving with one hand and taking with another’, that can quickly become catastrophic and it ends with the people’s individual requirements being at the very bottom of the priorities list.

Medicaid Changes Could Affect Thousands In United States

Over in the United States; thousands are at serious risk of having their existing supports cut due to changes surrounding Medicaid.

In a story published in The New York Times recently; a young woman preparing to graduate from law school has found her ability to work in the future under serious threat. Her existing support, provided from a funding package approved by Medicaid, currently enables the woman to attend her final exams and have the ability to partake in work experience. Cutting her support therefore takes away the existing structure which has allowed such independence until this point.

This is just one of thousands of examples should the changes to Medicaid go ahead.

Disabled people’s access to sex hindered by ideological barriers

Whether we choose to admit it or not, people with disabilities are not seen as being capable of having a “normal” sex life.

Disability is so often looked at in a negative light, especially by the outsiders looking in. When it comes to sex and intimacy; it’s a discussion that’s been brushed under the carpet for decades.

The biggest question is why? Why has this been a discussion too difficult to be had?

Sex education, as it pertains to those with disabilities of all kinds, needs to be on the agenda more. The access issues that disabled people face to sexual expression and experience are also very real. Those issues are misunderstood by the non-disabled community.

Funding Sex Workers For People With Disabilities

The Government pours billions of dollars into health budgets and social investment plans each year in New Zealand – and it’s time that investment helped people with very high needs disabilities toward a better accessible sex life.

Legislation in the Netherlands and Denmark supports Government investment for disabled people using sex services. In Britain, a programme called ‘Putting People First’ funded a young man to fly to Amsterdam and visit a sex worker, with all expenses paid.

In other areas of the UK, some local councils revealed they had used ratepayers money towards similar schemes in situations where it was deemed that the disabled person “couldn’t achieve sexual expression and release in any other way”.

No such funding models exist in New Zealand.

“Doing Things For People With Disabilities”

Perceptions and decisions have been made about “what’s right” or “in the best interests” of people with high needs disabilities, including those with intellectual impairments. The notion of someone with an intellectual disability choosing to see a sex worker is immediately seen as unsafe, or inappropriate.

This gets back to the discussion about consent and informed choices. But there is a fine line between informed choice and being talked out of doing something. Can we really deny that this doesn’t happen?

Like other areas of a persons life; sex and intimacy is another example of many people with disabilities (as well as their families) being afraid to have a discussion. There are so many reasons for that, and it will vary from situation to situation.

Let’s just stop and look at what’s happening in our society today.

Sex matters, for the good and the bad, because it is a normal part of the human culture. Let’s not put up yet another barrier for people with disabilities because we can’t look past our own definition of “what’s right”.

 

Director of Enabling Good Lives talks future direction

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The Enabling Good Lives’ Waikato team who will continue in their role as the demonstration continues. Photo: EGL Waikato

Enabling Good Lives will continue in the Waikato for two more years, but that doesn’t mean the status quo will remain.

Sixty new participants will be ushered into the Waikato demonstration each year; making for a total of 120 people who will get to experience the new model of support that provides greater flexibility and choice. Currently EGL (Enabling Good Lives) has 250 participants, most of whom are already fully funded.

Christine Potts, Director of the Waikato demonstration, says she is looking forward to the future challenges.

“There is a bit of growth for us here and the focus will be refining our systems, plus we will always be working with people to ensure they are getting the outcomes they want in their lives”, Potts said.

EGL’s Waikato Leadership Group will meet and discuss where the demonstration should go over the next two years.

Last week, the Minister for Disability Issues announced a ten-year plan to overhaul how disabled people access support systems in New Zealand. The first step is a new rollout in the Mid Central of the North Island, beginning in Palmerston North. The future direction will be built upon the principles of EGL, like greater choice and flexibility for people who require support to live an ordinary life because of their disability.

Christine Potts, says that the growth of EGL in the Waikato needs to align with the overall direction of the disability supports landscape moving forward.

“I’d like to see more people benefit, but here in the Waikato we can’t continue to be working in isolation. Government is working on transformation on a wider scale”, Potts said. “The key to it is seeing how much control disabled people have going forward, and if the direction can sit with them then I think anything is possible” Potts said.

Employment was a key focus area for the EGL demonstration prior to its launch in 2015. Two years later, employment for people with disabilities remains a huge challenge for the demonstration. Just six participants in the Waikato have gained work through their connections to EGL.

Potts recognises that the demonstration lacks in that area and confirmed that Work & Income would take the lead on that front in future. Such work includes Project 300, launched by the Minister last year.

“We won’t do any more targeted work in that area because Work and Income have several different initiatives surrounding that”, Potts said.

EGL participants in the Waikato will have the chance to have their questions asked at two forums in Hamilton next week.