Disabled people missing out on 'essential' support over relationship status

Friday, 13 May 2022

Kylie Elsbury-Dawson has been married for nearly 10 years and has two young children. She lives with chronic fatigue and other health conditions. She doesn't qualify for a Community Services Card or disability support funding because her husband's

People with disabilities should “feel free to find love and remain successful, independent people”, says a new bride.

But that’s not the case for married couple Lisa and Jordon Milroy, and many other couples where one partner has a disability, because of the “relationship penalty” in the welfare system.

Jordon just landed a job as an accessibility adviser at the University of Canterbury. With his personal lived experience of disability – he has cerebral palsy and a speech impediment – the new role “suits him to a T”, says Lisa.

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To manage his administrative duties, he requires at least two hours of typing a day. Despite advanced technology, Jordon can’t rely solely on predictive text or read/write computer software. Having a support worker to be his typist is a “non-negotiable”, they say.

Jordon Milroy, who has cerebral palsy, has had his disability support funding cut because the couple's combined income is above the threshold for him to receive it, despite his support needs and circumstances not changing after getting married.

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Jordon and Lisa Milroy married in May 2022.

“The prospect of losing this aspect of support is detrimental to him maintaining his role and staying employed,” Lisa says.

However, Jordon’s disability benefit is being cut because it's now based on his wife's income, despite his disability support needs and circumstances remaining the same after getting married.

“Because we are now seen as one by the state, he loses the financial and physical support,” says Lisa.

Jordon says he is a “lucky one” because he works full time, but the welfare system is “flawed and outdated”.

Kylie Elsbury-Dawson says if she received adequate disability funding and support to manage her health needs, she would get “quality time with my kids”, Mia and Reid.

Lisa works four days a week as a community nurse and is studying a Masters in Public Health.

She said she would “in a heartbeat” be happy to pick up the household tasks a paid carer would do to support Jordon, but she shouldn’t have to because it would “significantly impact” her lifestyle balance and ability to volunteer, study and work.

Currently, Jordon’s disability benefit has been completely cut – the couple were informed via an email from Work and Income, then the benefit just “disappeared”, says Lisa.

Jordon is still entitled to support funding for 10 hours a week for a typist for his job, but they aren’t sure how long that will last or if there is a deadline to it ending due to their relationship status. “No-one has been upfront,” Lisa says.

She says Jordon’s benefit should have nothing to do with her income, it should be seen as “essential” if a person needs support to live an independent life.

“This requires understanding long-term, lifelong conditions and making suitable allowances to enable people to live independently,” she says.

Disabled people should “not be afraid of losing support if they fall in love”.

Kylie Elsbury-Dawson reads a story to her 1-year-old son Reid.

When Kylie Elsbury-Dawson was supported by the welfare system as a teenager, she received up to $250 a week.

When she married at 23 years old, that was reduced to $70 a week.

Elsbury-Dawson describes herself as “a bit complex”. She lives with chronic pain, chronic fatigue syndrome, and a heart condition that resulted in oxygen loss to her brain. She tires very easily.

She works part-time (27.5 hours a week) as the regional disability leadership co-ordinator at CCS Disability Action. Her husband works as an audiovisual engineer, between 60 and 80 hours a week.

Because of her husband’s income, Elsbury-Dawson says she doesn’t qualify for any household management or disability support package.

“My husband ‘earns too much’, so I can’t get the home help support I need.”

It’s in the past five years that she has noticed she needs more support to help manage her disability needs, especially now that she has children.

Kylie Elsbury-Dawson lives with chronic fatigue and other health conditions. She doesn't qualify for a Community Services Card or disability support funding because her and her husband's combined income is too high.

“I have to sacrifice some things to be able to get through my day.”

Elsbury-Dawson says if she received adequate disability funding and support to manage her health needs, she would get “quality time with my kids”.

“On an average day, if I want to have a shower it means I might have to sacrifice cooking dinner. If I sacrifice having a shower and cooking dinner, it might mean that I actually can get to do my daughter’s homework with her that night, or read the same story to her 50-times over and stuff like that.”

Lawyer and disability advocate Dr Huhana Hickey was one of the 11 members in the Welfare Expert Advisory Group.

To get the right balance of managing her fatigue and also spending time with her children, she pays one of her nieces to help with the cleaning, but it’s not her preference.

“Natural supports mean the world to me, I have the most incredible family,” she says. “But I hate the idea of my family members cleaning the house for me because I don’t have the energy to do it. Or it means I can’t invite my friends without having the shame of having toys all over the floor or a sink full of dishes.

“I try not to invite my mum over because I know she’ll clean my house when she comes over.”

In 2018, Minister for Social Development Carmel Sepuloni announced the establishment of the Welfare Expert Advisory Group (WEAG) to review the welfare system.

The WEAG released a reported titled Whakamana Tāngata Restoring Dignity to Social Security in New Zealand in 2019, which included 42 key recommendations to the Government.

In 2018, Minister for Social Development Carmel Sepuloni announced the establishment of the Welfare Expert Advisory Group to undertake a review of the welfare system and advise the Government on recommendations.

Lawyer and disability advocate Dr Huhana Hickey was one of the 11 members in the group; she said there was a “desperate need to update and transform” the welfare system.

She said the group made recommendations to update the relationship rules because relationships are not what they were when the social security system was first designed.

“They assume all relationships are equal. They assume the traditional idea of relationships where a man supports the woman is still in play. And we know that is not the reality.”

When a disabled person enters a relationship, their benefit is dependent on the partner, therefore seen as receiving a “couple’s benefit”.

“So if your able-bodied partner takes on work, you lose your allowance, you lose your advantage and you could lose your benefit,” says Hickey. “Which means you’re stuck having to live off someone else. And in this day and age, it’s not that easy.”

Recommendation 28 of the report asks the Government to “move income support settings over time to be more neutral on the impact of being in a relationship in the nature of marriage”.

“This includes increased individualisation of benefit entitlement, bringing the couple rate of benefit closer to two times the single rate, and improving alignment between the approach taken by MSD and in other legislation,” the report stated.

Hickey says the limitations to a disabled person’s benefit being dependent on relationship status is also against what is included in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which New Zealand signed up for in 2007.

Article 23 of the UNCRPD states “Parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others”.

Says Hickey: “Having the relationship component in there is discriminatory, and it leads to very big discrimination towards disabled people who are trying to form relationships, have children, live a normal life, and yet the state wants us to, but are not putting in the measures in place, like removing the relationship part of it, for us to do that.

“Everyone is entitled to being in a good relationship,” she says. “We should be looking at disability benefits differently … that recognises the extra cost of disability.”

Sepuloni, who is also the Disability Issues Minister, acknowledged that the WEAG’s recommendations were “significant” and represented large-scale reform of the welfare system.

“We have identified a short, medium and long-term programme of work and steady progress has been made,” she said.

“Each recommendation of the WEAG requires a different level of work.

“Some are very complex and system-wide, while others are more simple to achieve. Our welfare overhaul isn’t just about ticking off WEAG recommendations, some of the responses to address the issues raised by the WEAG will look different as to what is recommended in the report.”

Hickey was told the MSD was “working on” the 42 recommendations made the in report, “but we haven’t actually seen any real change”.

Regarding recommendation 28 around relationships, Sepuloni said it was part of the medium-term work programme.

“Work has started on a review of the settings that underpin financial assistance and eligibility, this includes relationship definitions.”

When asked if MSD’s policy on relationships regarding disability support and funding is aligned with the UNCRPD, she said: “As we progress work on relationship definitions, consideration will be given to the unique needs of disabled people.

“Once it is established, we will also work together with the new Ministry for Disabled People (name to be confirmed) to ensure disabled people’s voices are included as we move through our welfare reform programme.”