advocacy

Waiting on Waivers: Nicole

A miniature figure with a hand in their pocket looks over at a miniature house and tree.
Posted on by Nicole LeBlanc

Nicole LeBlanc is one of the over 600,000 people waiting for home and community based services (HCBS). For people with disabilities who need support, home and community based services allow us to live in the community. In order to be eligible for these services, you have to apply to the Developmental Disabilities Administration (DDA) in your state and show that you qualify for institutional care, but would like a waiver to receive services in the community instead. When Nicole moved to Maryland, she had to reapply for eligibility to receive supportive services like cleaning and organization, budgeting, and medical care. So far, despite reapplying and receiving application support, Nicole has been denied the same services they received in another state.

Nicole’s Story:

My name is Nicole LeBlanc. I live in Silver Spring, Maryland. I’m 40 years old. I’m on the autism spectrum. I’ve worked in the disability field for 19 yrs. I’m a policy wonk. My areas of expertise are in disability employment, social security, medicaid, poverty, long term service supports/ home and community based services (LTSS/HCBS), person centered practices, systems change, redesign, legislative advocacy, and health equity. I’m a die hard Red Sox Patriots fan. I’m the oldest of two siblings.I got diagnosed with autism at 21 during a traumatic experience at Grafton Job Corps. I’m often known as the “budget watchdog” and “guardian of inclusion.” People often describe me as the most outspoken critic of the system.

In August 2016, I moved to the DC region/Silver Spring, Maryland, from Montpelier, Vermont for the Paul Marchand Policy Internship program. There, I interned with Kim Musheno, my mentor and role model at the Association of University Centers on Disabilities (AUCD.) In Vermont, I received HCBS services, but eligibility doesn’t transfer between states, so I applied to the Development Disabilities Administration (DDA) in Maryland. 

I have applied more than a dozen times since I moved here in 2016 and keep getting denial notices. I’ve had major crises, Social Security Administration (SSA) overpayment, being scammed, health ailments from severe COVID in 2021, and urinary tract infections (UTI’s) that lead to frequent emergency room (ER) visits. From 2020 to 2021, I experienced housing instability. I moved into a month to month where someone would move in one month and then leave without notice, leaving me on hook for someone else’s rent. I also struggle with adaptive functioning in areas of cleaning, cooking, computers, day to day problem solving, budgeting, and inability to prepare for or handle invasive medical procedures without substantial support. 

Giving someone like me a $30,000 HCBS waiver would save the government money in ER and urgent care costs and lead to better health outcomes. I’d also experience less stress and trauma with a stable support system that keeps me out of crisis. One thing that stands out in the dozen or more DDA denials I have gotten is they say “the applicant has many independent living skills that permit him/her to live independently and the documentation does not support [Intermediate Care Facility] (ICF) level of care.” Even though I live in an apartment, I’m not necessarily functioning 100% independently when it comes to tasks of daily living, budgeting, dealing with public benefits paperwork like a Social Security Disability Insurance (SSDI) work review, navigating the healthcare system in dealing with chronic ailments from COVID.

In my ongoing battle to get DDA HCBS I have worked with staff I know at Seeking Employment, Equality, and Community (SEEC) who I met when I worked at DDA as an Advocacy Specialist from 2017 to 2020. I have also sought help from Disability Rights Maryland, to no real success. Most recently Karen Lee, SEEC Executive Director, referred me to Deborah Fisher who has her own business focused on helping people with complex cases get into the system. I’ve also had numerous psychological evals done by Minder Memory and a local psychologist to get more testing in order to make the case that I actually meet the criteria for HCBS. My strengths cover up a lot of my deficits. When you meet me you might assume I have the skills to thrive independently outside the system, which is not true.

In the meantime, I get three hours every other weekend from a private duty Director Support Professional (DSP) that Makom sends me a bill for every month. It gives me staff to help with organizing, and being taught how to cook a turkey. On top of that I rely on SEEC pro bono staff support from Steve Blanks, who is the Director of Partnerships. Steve helps me out every time I have a crisis, with bureaucratic paperwork like medicaid review, SSDI work activity review, fixing my printer, tech issues, installing ink cartridges, and more. Everytime I need a bunch of stuff printed I send it to Steve. Right now I’m waiting for another DDA redetermination decision to come back. I resubmitted my application with an updated in person evaluation and adaptive functioning assessment. I also included letters of support from my medical team and friends. 

Nicole’s Recommended Policy Changes: 

Changes I would love to see made at the state and federal include but not limited too:

1. Making HCBS an entitlement. It should be an entitlement to live in the community and not in an institution or nursing home.

2. Eliminate IQ tests as a criteria for HCBS eligibility. IQ scores do not reflect the adaptive functioning challenges many adults with low to moderate support needs deal with on a daily basis.

3. HCBS should be portable state to state. If you are eligible in one state, like Vermont, you should be automatically eligible in another state like Maryland, or Colorado for example. HCBS portability would save time, money, and stress when moving to a new state. If the government used the same eligibility criteria in all states it would be more efficient and offer people a better quality of life long term.

4. Investing in a proactive HCBS system of care that focuses on the prevention of crisis rather than waiting for crisis to occur. This would reduce acute healthcare costs and ER visit usage. The system would be focused on keeping folks healthy and out of crisis. Studies show people with autism who don’t get HCBS have more ER visits than those that do. 

5. Supported Employment. Job coaching should be an entitlement. The lack of access to job coaches is a big reason why adults with autism struggle to get, keep, and advance in their jobs or careers. I’m one of those people who could benefit from long term support. Lack of long term job support is at the heart of why people with autism have high rates of unemployment and underemployment.

6. State Plan Medicaid should pay for personal support for people with autism and intellectual and developmental disabilities (I/DD) who are not at risk of ICF level of care.

7. Allow people with disabilities to buy into HCBS just like we buy into Medicaid for workers with disabilities.

8. Expand SSDI, SSI work incentives to include deducting the cost of in home support across all life domains for workers with disabilities.

9. Eliminate asset and earnings caps so that we can work more and hire DSP’s to support us in the community.

10. Declare people with autism and intellectual and I/DD a medically under-served population. This would go a long way in eliminating health disparities and achieve better health outcomes at lower costs.

11. HCBS access for all can reduce acute healthcare costs by ensuring that our medical needs are met, in terms of diet, lifestyle and prevention of illness.

Nicole LeBlanc is a Dr. Ruth Sullivan policy fellow, self-advocate, and consultant on disability policy and disability employment. As a 2018-2019 Self Advocacy Resource and Technical Assistance (SARTAC) fellow, Nicole created guides and toolkits for self-advocates to advocate for real jobs for real pay, such as “Why Employment Matters, Tips for Speakers and More.”

About Rooted In Rights

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights.

A Stake in the Fight: An Activist’s Take on Eco-Ableism

Black background. A clear drinking glass filled with multicolored plastic straws.
Posted on by Anonymous

I’ve been involved in advocacy on disability and chronic illness-related issues for several years now; my work has taught me important transferable skills. Because I have a deep love for nature and our planet— and since disabled people are disproportionately impacted by climate change —I sometimes ask myself why I’m not using those skills to organize at the intersection of disability and environmental justice.

The unfortunate truth is, everytime I begin to dip my toes into an environmental advocacy space, I’m reminded rather quickly of the reason I haven’t spent much time there. As a disabled person whose access needs don’t always align with the idealized “perfect” eco-friendly lifestyle, I’ve had a few too many interactions with individuals in the environmental activist community that left me feeling misunderstood and unwelcome. I know that I am not alone in this experience. 

I believe that living in alignment with our values is important, and for me, that includes being mindful of how my actions impact the earth. I practice eco-friendly habits as much as possible: I thrift almost all of my clothing, I compost, and I’ve made nearly every sustainable swap that one could think of. But as someone living with complex, disabling chronic illness, certain lifestyle changes are not possible for me. 

My particular disabilities mean that I cannot simply forego air conditioning in the summer, go vegan, or bike to work. I rely on my car more than I would like to because walking too far can trigger chronic pain. In addition, my weekly immunoglobulin infusions produce an unfortunate amount of plastic waste that is outside of my control.

Some people with disabilities face different barriers than I do to sustainable practices, depending on their needs. I have disabled friends who require plastic straws to drink, and others who rely on pre-packaged foods and single-use items because chronic illness limits their ability to cook. Unfortunately, these kinds of needs and limitations, when asserted in environmentalist spaces, often seem to be met with skepticism, disapproval, or even condemnation. 

A few years ago, in a conversation with a local climate organizer, I tried to explain why following a vegan diet is not possible or healthy for everyone. Like many others in the chronic illness community, I’ve endured extended stretches of time during which I could only tolerate a few “safe” foods without scary mast cell activation syndrome reactions. Over the years, I’ve learned that my most consistently safe foods are not plant-based and that I need to give my body whatever nourishment it accepts.

As I explained this to the activist, she asked invasive questions about my medical conditions, expressed disbelief that any chronic illness could make a fully plant-based diet inadvisable, and implied that I was further harming my health by not being vegan. Essentially, someone who barely knew anything about me told me that I was wrong about my own disabled body. I have watched a similar pattern of behavior unfold repeatedly on social media, whenever a disabled person states that a particular eco-friendly change isn’t accessible for them. 

I didn’t know until recently that there was a term for this particular brand of disability discrimination that shows up in environmental activism, called “eco-ableism.” Eco-ableism is the result of nondisabled people failing to consider that their proposed solutions to environmental issues can make life inaccessible for disabled people, all while neglecting to recognize the fact that disabled people are some of the most vulnerable to the effects of the climate crisis. In my experience, eco-ableism often also involves a failure by nondisabled people to believe or empathize with disabled people when we speak up about our access needs or the ableism that we’ve encountered. 

There are steps that environmental activists can take to prevent eco-ableism and make their spaces more welcoming to disabled people. One of the changes I most hope to see is a shift away from the scrutiny that disabled people are often met with when we assert our needs. Everyone can be a better ally in general to disabled people by trusting that we know our own bodies and access needs better than anyone else can. 

Unfortunately, nondisabled skepticism about our access needs is nothing new for the disability community. Many of us know what it’s like to fear that we’ll be harassed for using accessible parking, accused of “faking” if someone sees our legs move in a wheelchair, or judged as “lazy” if we are unable to work.

Activists striving to be anti-ableist in their organizing can avoid perpetuating this exhausting scrutiny by accepting a disabled person’s stated access needs without disbelief, invasive questions, or unsolicited feedback. If a disabled person shares that there is a particular way they need to eat, drink, get around, or take care of their body, the first instinct of fellow advocates should be to believe them. 

I’ve also noticed that eco-ableism typically manifests when activists are spending energy analyzing each others’ individual actions, often at a detriment to work on larger systemic issues. To be clear, our individual choices matter; we should all do what is within our abilities to live in alignment with our values. However, irresponsible corporations and government inaction are largely to blame for the climate crisis— not disabled people who need straws to drink.

I hope that, instead of questioning individuals about whether their disability actually prevents them from making a specific sustainable swap, advocates will redirect that energy toward systems change that creates a more just world for all of us. Since climate change has a disproportionate impact on people with disabilities at a systems level, an inflexible focus on individual actions that frames us as the problem ironically only serves to further alienate a marginalized group from advocacy on an issue that we are experiencing most acutely. 

Finally, to avoid eco-ableism and ensure that proposed environmental policy changes don’t inadvertently leave any marginalized group of citizens behind, it’s also essential that disabled people play a significant leadership role in shaping environmental movements and policy.

When diverse  perspectives are valued and integrated into a movement, the solutions we fight for are solutions that lift up all of us, as opposed to unintentionally  creating more obstacles for some. To achieve true equity, not only do we need to make sure that disabled people have seats at the table, but also that our viewpoints are regarded as important and meaningfully incorporated into decision making. 

Despite the barriers some disabled people might face to a sustainable lifestyle, disability justice and environmental justice are not in conflict. Rather, they are deeply interconnected, and the disability community has a serious stake in the fight for the future of our planet. Disabled activists also have valuable skills and perspective to bring to environmental advocacy; I’m confident that our involvement will only make the movement stronger. While eco-ableism is discouraging, I’m optimistic about the kind of world we can build when we work together to ensure that all perspectives, abilities, and needs are taken into account.

Anonymous (she/her) is a nonprofit professional and chronic illness advocate based in New England.

About Rooted In Rights

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights