Government programs that provide income to people who need care are designed to assist only those who are impoverished. These programs are calibrated to provide the absolute minimum, so as to ensure the program is a last resort rather than a reliable support.
This leads to the fascinating American rite of passage where adults with retirement savings and assets transfer these assets over to their children, prepay for anything they can possibly pay for in advance, and empty their bank accounts. In the US it’s normal to intentionally impoverish yourself to avoid being personally responsible for the cost of your long-term care.
Instead of lifting people with disabilities out of poverty — and helping people live meaningful lives and potentially take on paid work — it mandates that they remain below the poverty line and out of the workforce in order to access government support. The government creates access hurdles because it wants families to be fully responsible for this care for their lifetime.
The belief that care is a family matter means that people with care needs lose whatever support they have if they get married.
During the fight for marriage equality there was moral panic over how the next step in the movement would be for men to have the right to marry dogs. The real next step in marriage equality is allowing the disabled to have a spouse without mandating that spouse take on responsibility for all ADL and financial support.
It’s true that it’s not illegal for someone with a disability to get married. It’s also true that, for all too many people who love someone with care needs, marriage would lead to impoverishment. Living together also puts their support at risk. A romantic partner is required to be a caregiver, so any disabled person with a partner is unlikely to qualify for support.
When I was in high school in the late 90s, I didn’t give much thought to my sexual identity. Growing up on a flower farm near Asbury Park, New Jersey’s answer to P-town, meant I’d seen my parents work along side and hang out with plenty of gay people, even if I grew up in a faith that did not approve. It was just one thing on what seemed like a very long list of the weird things about me.
My friends in community college told horror stories of being kicked out of their homes, beaten by their parents, tormented by classmates, sent back to their home countries, and fired from jobs. It was common to have to carefully plan out trips to the toilet because of their gender. I started to understand why gay pride mattered.
Marriage equality still seemed like a plea for approval — the last thing 19-year-old me would admit to wanting. Why waste time and effort marching for the right to be just like the people who rejected us? Why mimick their lives when that was a world we’d escaped?
I probably went to the HRC rally for marriage equality to meet girls. That was my motivation for joining the campus LGBTQ.
I stood in the back of the expansive Berkeley Carteret ballroom because it was too full to even enter. One person after another got on stage and explained what not being able to legally marry cost them — not in quantitative terms, how their life was torn apart when their partner got sick or died.
Parents who’d rejected them decades ago showed up to make medical decisions, bar their partner from visitation, take custody of their children. They’d cut ties only to return to claim their gay child’s home, car, even their pets.
It meant not being able to put your partner on your health insurance and not being able to access insurance in the private market, leading some creative couples to have one adult adopt the other so they could officially become family.
It meant spending months or years and thousands of dollars putting together legal paperwork that still didn’t match the rights you’re granted by a marriage certificate. I don’t know what they cost then. Today they cost $28.
In a world where health insurance, care work, housing, childrearing, inheretance, and immigration are family matters, it matters who counts as family.
If your friend dies and leaves you the house you live in together, you pay taxes on that. If your spouse does, you don’t owe anything.
If your friend dies without a will, you find yourself homeless. If you own the house with your friend, you will have to buy out their heirs in order to stay.
It’s not about your net worth. It’s about being able to stay in the home where you lived with your partner. It’s about staying in your community. It’s about limiting just how much your life is destroyed when there’s a car crash, an overdose, a stroke, a diagnosis.
In the US, there is Supplemental Security Income to protect people who have never been able to work or don’t get enough in Social Security to live off of. To qualify, you need to have less than $2,000 in assets to qualify for up to $9,530 a year to live on. If you're married, you need to have less than $3,000 for the chance of $14,293 in financial support for both of you to live on.
Numbeo pins the monthly cost of living in New Jersey at $1,065, not counting housing.
A single person in New Jersey qualifies for Medicaid with a monthly income of up to $1,073. For a married person the limit is $1,452, regardless of whether or not both of them are applying for coverage.
What if you have too much in assets to qualify for Medicaid and you need the care they provide?
“Medically needy individuals can still become eligible by “spending down” the amount of income that is above a state's medically needy income standard. Individuals spend down by incurring expenses for medical and remedial care for which they do not have health insurance. Once an individual’s incurred expenses exceed the difference between the individual’s income and the state’s medically needy income level (the “spenddown” amount), the person can be eligible for Medicaid. The Medicaid program then pays the cost of services that exceeds the expenses the individual had to incur to become eligible.”
Medicaid does have adjustments to prevent spousal impoverishment. It is not generous.
The mission of Disability Without Poverty is to ensure that the CDBA is passed and provides support in addition to, not instead of, existing programs.
As a Canadian resident, I have health insurance coverage by right of being a person. I have this coverage regardless of whether or not I’m married and regardless of where or if I work.
Imagine if I also had access to prescription coverage, caregiving support, and financial support just because I’m a person, not based on who I’m legally tied do.
Imagine it were still the case that the fire department would only try to save your house if you paid for private fire insurance. Imagine your children could only attend school if you could afford the tuition. Imagine if all banks were like credit unions with restricted membership based on the employment of family members. Imagine if you could still only sign up for funeral insurance based on guild membership. Imagine if the price of groceries was different depending on wether or not you were in a union.
As a society, we decide what is a perk — or penalty — of marriage and what we all have access to.