Consumer-Directed Personal Care as a Human Right

I consider myself an Angry Asian American Disabled Woman, working hard every day, playing and enjoying life in San Francisco. Why so ‘angry,’ you ask? I guess part of it is the juxtaposition of the way I view myself and the way I seem on paper to society. My anger is a justified and constructive response to low expectations and stereotypes that I experienced from adults around me at an early age.

I have spinal muscular atrophy. This means I use a wheelchair and require almost total care for my activities of daily living. Recently, I turned 40, and my parents and I had a good laugh because the doctors told them I wouldn’t live past 18 when I was first diagnosed. While my disability is progressive and I rely on a Bi-Pap ventilator to help me breathe and a hospital bed to prevent bedsores, I am not an object of pity or an inspiration because I happen to have an active and full life.

One of the main reasons why I have a pretty, pretty, pretty amazing life as a person with a disability is my usage of consumer-directed personal care services. I use a program in California called In Home Supportive Services (IHSS).

IHSS is the largest program in the U.S. that provides consumer-directed personal care. About 453,417 low-income older adults and people with disabilities use IHSS to remain safe in their homes and participate in their communities. All IHSS consumers received an 8 percent reduction in their hours last year and are projected to lose another 7 percent starting in July 2014. Future cuts in hours and other proposed measures would hurt IHSS consumers, many who already struggle to meet their needs with their recently-reduced hours. The state’s proposed changes and cuts would also impact the 385,425 underpaid and undervalued home care providers who are inextricably linked to our well-being.

A typical day starts with my home care provider, “Amy,” an immigrant from China, who helps me get up in the morning. She turns off the Bi-Pap machine, gets me up and transfers me into my wheelchair. With her assistance, I use the restroom, groom and dress, and prepare something to eat for breakfast. While I work on my laptop in my bedroom, she does some other essential tasks for me, such as laundry, housekeeping and food preparation. I also have my two parents as my paid home care providers. My parents are an integral part of my personal care team—they turn me in bed at night and are available around the clock as needed. It can be hard to find people willing to work overnight shifts and knowing they are paid for their labor gives me great peace of mind.

IHSS is a unique program that allows consumers to hire, fire, train and manage their home care providers. Family members can also become paid providers, which is not the case in other state personal care programs. Programs like IHSS and other Medicaid-funded Home- and Community-Based Services (HCBS) are more cost effective than nursing homes and other institutions. In 2008, California spent three times more on nursing facility care ($32,406) than HCBS ($9,129) per user.

Figures like that keep me angry and focused on advocacy. I worry that the progressive aspects of IHSS and other consumer-directed programs across the country will slowly erode over time as states grapple with their budgets and make cuts that undermine the ability of people with disabilities and older adults to live with autonomy and dignity.

To me, IHSS is the embodiment of the disability rights movement—the belief that people with disabilities aren’t patients, but rather the experts of their own care, that they deserve to have control over every aspect of their life despite the severity of their functional limitations. Interdependence and being part of a larger community is my definition of independent living. I may be ‘dependent’ on others for my survival, but I also contribute to society as a whole.

Imagine you are not able to decide what time you go to bed or when you get to take a shower. I’m guessing most people would not tolerate that and yet this is a very real possibility for people with disabilities and older adults all over the country who have their HCBS services cut and may have to live in a nursing home. This is why I view the usage of consumer-directed personal care services as a fundamental human right.

It’s not an exaggeration for me to say that without IHSS, I would not be able to be where I am today. Programs like IHSS help people not just survive, but thrive. It costs less than institutional care. It keeps families together. It supports community living. And it is my human right to have the same choices and freedoms as my non-disabled counterparts.