Articles, Newsletters, Podcasts, and Video

100 Meters; Corona Corona

By Richard Downes / 2022-06-16
Posted in

(An hysterical historical perspective)

Oh god. The news is pretty worrying March 2021 in the UK but its not really as insufferable as the media

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latest gove-ment koolaid

By gobscure / 2022-06-15
Posted in

even viscount osborne who failed o-level maths (allegedly) dropped con policy of benefits being used for mortgages for social housing – ps. only time alexander-boris-de-pfeffel

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Desperate For Help:

By Grace W. Dow / 2022-06-15
Posted in

CW: Ableism, Abuse, & Neglect

The New York Times recently published an article about a young woman named Sabrina, who is autistic. The article highlights Sabrina’s parent’s difficulties with caring for her at home as her needs have increased. I found the article to be very one-sided, and it was difficult to read.

The New York Times only reported from the parent’s point of view. Readers never hear from Sabrina, herself. Disabled people should be able to tell their own stories. It saddens me that she was unable to. After all, the article is about Sabrina, but she was never interviewed. In fact, no autistic people were interviewed in the article. 

The more I read the article, I realized that it highlights a much bigger problem that people with disabilities and their families are dealing with nationwide. There is not enough help for people with disabilities. This means that families often struggle to care for their loved ones at home.

In March 2021, more than 800,000 people in the United States were on waiting lists for home and community-based services provided by Medicaid. The states with the most people on waiting lists are mostly in the south and east. In 2015, 35 states had waiting lists for waiver services. Texas had the most people on such waiting lists (232,068), while North Dakota had the fewest people on such lists (3). There are no waiting lists in Delaware, D.C., Hawaii, Idaho, Massachusetts, Missouri, New Jersey, New York, South Dakota, or Washington.

Long waiting lists often mean people with disabilities and their families are without critical support for years. Families are often exhausted when dealing with their loved one’s needs. In some cases, people have extensive needs. Some families decide to place their loved ones in residential settings such as group homes because of inadequate support in the home.

Kim Oakley placed her autistic son James in a group home in California after not receiving enough support to manage his complex needs at home. While living at the group home, James was left unsupervised. Subsequently, he sustained a hematoma to his ear following an episode of self-injurious behavior, which required surgery to repair.

I am one of the millions of Americans who benefit from home and community-based services provided by Medicaid. I am fortunate to live in Massachusetts, which has no waiting list for services. Medicaid’s PCA program allows me to live in my own apartment rather than in a group home.  In the past, it has been difficult for me to find PCAs. I went through three different PCAs in three semesters of college. I began to wonder if I’d be able to attend college at all, because of this.

Low pay makes it difficult to find home healthcare workers. According to the Bureau of Labor Statistics, PCAs and other home healthcare workers in the United States only make $13.02 per hour. The New York Times reports that the average hourly income in six states is just $11, and one in five home care workers is considered to be living in poverty. People can sometimes make more money working at a fast-food restaurant than in direct care positions.

Medicaid’s home and community-based services allow people with disabilities to live at home instead of in an institutional setting. Medicaid is a lifeline for so many people like me, and must be expanded to accommodate all Americans who need help. Without help, people are often forced into unsafe environments, and this can have devastating consequences.

Sources:

Bernes , Michael J, and Patricia Callahan. “In Illinois Group Homes, Adults with Disabilities Suffer in Secret.” Chicago Tribune, Chicago Tribune, 20 Apr. 2022, https://www.chicagotribune.com/investigations/ct-group-home-investigations-cila-met-20161117-htmlstory.html.

Children and Adults with Developmental Disabilities have same legal rights under the Lanterman Act”. YouTube, uploaded by Kim Oakley, 4 Mar. 2018, https://www.youtube.com/watch?v=Cw-MMb66GnM

Diament, Michelle. “Waiting Lists May Be Eliminated for Disability Services Provided by Medicaid.” Disability Scoop, Disability Scoop, 22 Mar. 2021, https://www.disabilityscoop.com/2021/03/22/waiting-lists-may-be-eliminated-for-disability-services-provided-by-medicaid/29252/.  

Donovan, Liz, and Muriel Alarcón. “Long Hours, Low Pay, Loneliness and a Booming Industry.” The New York Times, The New York Times, 25 Sept. 2021, https://www.nytimes.com/2021/09/25/business/home-health-aides-industry.html

“Home Health and Personal Care Aides : Occupational Outlook Handbook.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 8 Sept. 2021, https://www.bls.gov/ooh/healthcare/home-health-aides-and-personal-care-aides.htm.

“Number of Persons on Medicaid 1915(c) HCBS Waiver Wait Lists, 2016.” Center On Disability , Center On Disability , 31 Dec. 2016, https://centerondisability.org/ada_parc/utils/indicators.php?id=9.

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Embracing Cerebral Palsy:

By Grace W. Dow / 2022-06-14
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Over time, my feelings about my disability have evolved. Growing up, I didn’t like that I had Cerebral Palsy. I wanted to fit in with my peers in school. The older I was, the harder this became. In elementary school, I went to birthday parties and played with my friends at recess.

Middle school was a different story. I didn’t fit in as easily and began feeling lonely. I didn’t have many friends in middle school and began to spend more time alone. This was when also when I started to develop depression.

Puberty was a challenging time for me as well because I began experiencing functional shifts. This was frustrating and made me sad.

In high school, I often felt like I was on the outside looking in. Sometimes, I felt like I was on a different planet than my peers. They were getting their driver’s licenses and part-time jobs, and I still kept track of how much fluid I had to drink at school.

Adulthood has brought with it an entirely new set of challenges. Nobody tells you how to be an adult, let alone an adult with Cerebral Palsy. Inclusion was always important during my childhood. I played sports, went to birthday parties, and even went to Mad Science summer camps.

Ever since turning 18, inclusion doesn’t seem to matter much anymore. It’s been incredibly challenging for me to attend college and find a job. The pandemic has also added extra challenges to daily life for most people, myself included. COVID-19 has made it very difficult for me to find a job.

Socially, I feel more isolated than ever before. I spend most of my time at home with my roommate. I usually spend most of my day in my bedroom, watching TV and on the internet. Technology has helped me keep in touch with family and friends since 2020. Technology has always been vital for me to live with a disability, even more so during the past two years.

Since I’ve grown up, I’ve learned to live with Cerebral Palsy. I’ve learned that I’ll always have limits, and that’s okay. I may never get married or drive a car. With time, I’ll embrace my limitations. Cerebral Palsy doesn’t have to mean I don’t enjoy life. It might mean that life looks different for me than it does for most people, but as long as I am happy, healthy, and surrounded by loved ones, I’ll have a good life even with Cerebral Palsy.

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Independence Shouldn’t Be Hard:

By Grace W. Dow / 2022-06-13
Posted in

Since entering adulthood, I’ve learned that living an independent lifestyle with a physical disability can be difficult. I had to request more PCA hours from Medicaid when I graduated high school. This was necessary for me to be able to attend college. I had to appeal Medicaid’s first decision. I wanted to explain to them that I wanted to attend college like many other 18-year-olds. It shouldn’t matter that I need a PCA to help me with activities of daily living.

Dealing with health insurance has also been challenging as an adult. I received a new power wheelchair last year, and the process was grueling. My insurance company insisted that I didn’t need a new wheelchair, and I had to appeal their decision twice. Even after winning my second appeal, my insurance refused to cover the seat elevator on my chair. They said I didn’t need it for medical reasons. iLevel helps me reach cabinets, the refrigerator, and shelves at the grocery store. I can also get myself a glass of water, thanks to iLevel.

In August 2020, I moved out of my parent’s home into my own apartment. Finding an accessible apartment proved to be very challenging. I looked at several different apartments. None of which were wheelchair-accessible. After doing lots of research, I was able to find an apartment that, while not ideal, was workable. I can get around, and I use a bath transfer system to shower.

Accessible housing is hard to find nationwide. Apartment List conducted a study utilizing data from the American Community Survey and the American Housing Survey in February 2020. Only 9% of households with a disabled member live in an accessible home, according to the survey. Even though more than 15% of households in the United States include a physically disabled member, just 6% of homes are accessible.

Now that I’ve lived independently for almost two years, my next goal is to become employed. In this economy, finding a job is challenging for anyone, even more so for those with disabilities. In the United States in 2021, 19.1% of people with disabilities worked, according to the Bureau of Labor Statistics. This means that 80.9% of people with disabilities in the United States were unemployed last year. I am, unfortunately, one of the millions of Americans with disabilities who are unemployed.

I’ve been looking for a job since I was 19-years old and have been unsuccessful. I couldn’t get a job at McDonald’s or a local grocery store once I disclosed my disability. I’ve filled out hundreds of job applications since then and haven’t had any luck. In April, the manager of a local Homewood Suites hotel rescinded my interview for a front-desk position once I told her that I had Cerebral Palsy.

Discrimination is supposed to be illegal according to the Americans With Disabilities Act, but it happens regularly. I’ll be unemployed forever if societal attitudes toward disabled people don’t change. I don’t want to rely on SSI for the rest of my life.

My 18-year-old sister, who doesn’t have Cerebral Palsy, has now found two jobs before I’ve found my first one. She worked at a fast-food restaurant in high school and recently got a summer job at a nearby private school. This is very frustrating to me. I’m 22-years-old and have never held a paying job.

Employers are sometimes unwilling to provide necessary accommodations. Having a personal care assistant available is essential to my professional success. If I didn’t have a PCA, I wouldn’t be able to get to work or use the restroom. I couldn’t work full-time without going to the bathroom at some point during the day. Employers are not obligated to allow personal care assistants at work. Despite the fact that having a personal care assistant is likely the most important accommodation I’d require.

It’s possible that one of the reasons many disabled people are unemployed goes unnoticed. Some of us with disabilities rely on government assistance, such as Medicaid, to live our lives. People cannot go a day without getting dressed, having meals, or showering. The amount of money you can make and the number of assets you can keep are both limited in some of these programs. The system ultimately forces disabled people to live in poverty in order to survive. Medicaid should not be based on a person’s financial situation.

I want to be able to work, pay taxes, and live an independent lifestyle with Cerebral Palsy. Achieving independence as a disabled person shouldn’t be as hard as it is. All disabled people should be able to live their lives as they want, just like any non-disabled person does.

Sources:

“Persons with a Disability: Labor Force Characteristics Summary – 2021.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 24 Feb. 2022, https://www.bls.gov/news.release/disabl.nr0.htm.

Warnock, Rob. “How Accessible Is the Housing Market?” Apartment List , Apartment List, 19 February, 2020, http://www.apartmentlist.com/research/how-accessible-is-the-housing-market.

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Declaration 27: Let Us In

By Richard Downes / 2022-06-13
Posted in

1. Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific

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Care Isn’t A Tragedy:

By Grace W. Dow / 2022-06-12
Posted in

Thanks to Lucy Webster for this post idea.

I have received PCA services through Medicaid since I was around eight years old. People are often surprised that I am comfortable with needing such hands-on care. It isn’t easy to need help with dressing, showering, and toileting. I’ve never known any different. 

Sometimes, I wonder what it would be like to shower and dress alone. Imagine employing a stranger to assist you in getting dressed, showering, and using the restroom. This is a reality in the lives of many disabled people. I never like hiring a new PCA because it’s uncomfortable at first. It’s uncomfortable when they have to help me use the bathroom for the first time. 

At the same time, my personal care assistants allow me to live life to the fullest. I wouldn’t have the same quality of life without my PCAs. Because of my live-in PCA, I’ve lived in my own apartment since August 2020. It was a dream come true for me. For a long time, I didn’t know if I’d be able to move out of my parent’s house.  My PCAs allow me to live life like any other 22-year-old. It’s because of their support that I’m not living in a nursing home. 

My PCAs allow me to attend college, go to the movies, go grocery shopping, and go out. If I didn’t have their support, I’d be stuck in the house all of the time. I know my PCAs don’t have an easy job. They have to help me with the most personal tasks. However, they all care so much about me. I’ve known some of them for years now. My PCAs know me very well. My live-in PCA knows what my favorite foods are and what juice flavors are my favorite. 

Living with Cerebral Palsy is hard at times. Needing help with activities of daily living isn’t easy, but it’s just a part of my life. I am forever grateful to every PCA I’ve worked with. PCAs help people with disabilities live their lives to the fullest.

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Hard Days:

By Grace W. Dow / 2022-06-11
Posted in

CW: Depression

Lately, I’ve been experiencing more spasticity and chronic pain than usual. Spasticity makes my muscles feel very tight, which makes movement difficult. Ever since puberty, I’ve experienced more pain every day. The pain was terrible when I went through puberty. 

Ten years ago, I had a hamstring lengthening at Children’s Hospital Boston. The recovery was overwhelming. I experienced painful muscle spasms, nausea and vomiting, and an adverse reaction to Valium. I’m grateful that my parents were there with me the whole time. My aunt and cousins also came to visit. I welcomed any distraction while I was in the hospital.

I remember how relieved I was to sleep in my bed after spending a few days in the hospital. I didn’t get much sleep. I was happy to come home and see my dog too. Lowell was always by my side when I was home. Pets make wonderful recovery companions. 

When I was growing up, I was told that Cerebral Palsy wouldn’t change. Puberty was when I first experienced functional shifts. This was frightening. I slowly lost the abilities that I once had. I blamed myself. Looking back, this was when I started to develop depression. It made me sad that I couldn’t do as much as I used to.

I could no longer crawl on my hands and knees, and using forearm crutches became harder. When I was 13, I decided that I needed to get a power wheelchair. I was upset that I needed a wheelchair. At first, I was embarrassed to use it. Today I can’t imagine not having a power wheelchair. I’m so much more independent with my wheelchair. 

Nowadays, I can’t walk long distances and experience more involuntary movements, particularly in my legs. Besides being annoying, the involuntary movements make activities of daily living such as showering and toileting more challenging. In the shower, my legs often scissor, which means they cross involuntarily. This makes it hard to get cleaned up. Involuntary movements also happen when I’m in bed. When my legs are crossed, it’s hard to sleep.

In addition, ableism can make living with Cerebral Palsy harder. I’m constantly frustrated by the way society treats disabled people. I am a 22-year-old, so please don’t treat me like I’m five. I know that I will never have all of the same opportunities as non-disabled people. In particular, I worry that I’ll never find a paying job.

Some days with Cerebral Palsy are harder than others. Coping with pain is not easy. I do the best I can and try to remain positive. I’m grateful for my friends and family, who make even the toughest days much easier. I am so lucky to have them all.

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Finding Joy:

By Grace W. Dow / 2022-06-10
Posted in

Cerebral Palsy makes life hard sometimes. It can be exhausting having to advocate for yourself. When I received my power chair last year, the process was grueling. I became tired of having to send e-mails and write letters. It was frustrating when I received denial letters in the mail. I waited over a year for my chair to arrive.

Ableism is very exhausting to deal with. I’m tired of having to prove myself just because of my disability. One day, I hope to become employed and get married. These goals aren’t unusual for an adult in their twenties, but many non-disabled people seem to think that my hopes for the future are unrealistic.

Despite my challenges, my life is worth living. I am fortunate to have an incredible amount of support from my community. I have a large, loving family. My parents, grandparents, aunts, uncles, younger sister, and cousins have always been there for me. They’ve seen me through the good, bad, and ugly.

In addition to my family, I am blessed to have wonderful friends, doctors, therapists, and PCAs. They all care so much about me. I’ve known some of them for years now. Growing up, I had the same paraprofessional for ten years. It was comforting knowing she was there for me whenever I needed her. We still keep in touch now.

I have also worked with amazing doctors, therapists, and PCAs. They help me live life with CP to the fullest. My PCA provides around-the-clock care. He’s always there for me when I need his help. My doctors and therapists help me live with less pain. They make it possible for me to continue walking, and they are excellent advocates for me as well.

My friends have always been accepting of my disabilities. They understand that my disability might mean they have to help me or call ahead of time to inquire about accessibility before going anywhere. I’m never seen as a burden, extra work, or someone to be pitied by them. I’m just a friend. I am grateful to have them all in my life.

Life with Cerebral Palsy can be challenging. I try my best to find joy every day. I am blessed to have a wonderful community. I am forever grateful for all of the support I’ve had. Life is a journey for all of us, and finding joy makes the journey easier.

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Frustrating Physical Symptoms:

By Grace W. Dow / 2022-06-09
Posted in

Cerebral Palsy is a challenging disability to live with. As I’ve grown up, I’ve experienced more mental health issues related to my disability. At times, the physical symptoms are also very frustrating. During puberty, I began to experience more pain due to my Cerebral Palsy.

Spasticity is a disorder characterized by an unnatural increase in muscular tone or stiffness, which can impair movement, speech, or cause pain. Damage to brain pathways controlling muscle movement in the brain or spinal cord is the most common cause of spasticity.

Factors such as mood, weather, and stress can all impact the level of spasticity I experience at any given time. When it comes to frustration and excitement, in particular, my spasticity will increase. Extreme temperatures also affect my spasticity. In the winter, it’s often hard for me to spend time outside. This is also the case during hot summers. In the spring and fall, when temperatures aren’t too extreme, movement is much easier for me.

I also have a distinctive gait that is commonly seen in people who have Cerebral Palsy. Flint Rehab states, “A scissoring gait is characterized by the knees and thighs pressed together or crossing each other while walking.”

The cause of this gait is high muscle tone (spasticity) in the hip adductors. The muscles that bring the thighs together are known as the hip adductors. Internal hip rotation occurs due to the continual contraction of these muscles, and the upper section of the legs cannot separate during walking.

My scissoring gait also makes activities of daily living challenging. In particular, showering, dressing, and toileting are difficult. It is hard to shower thoroughly when my legs are crossed involuntarily. Sometimes my PCA has to hold my legs apart so I can wash up. It also makes getting dressed a challenge. My legs will automatically cross when I’m trying to get dressed.

Because of my cerebral palsy, fatigue is also present every day. Walking and moving around quickly causes exhaustion. Routine tasks take me longer to complete. It takes a lot of energy to function on a daily basis with CP. When I was 13 years old, fatigue was the main reason I wanted to get a power wheelchair.

When it comes to physical activity, I expend far more energy than my nondisabled peers. According to the American Academy for Cerebral Palsy and Developmental Medicine, people with cerebral palsy may need 3 to 5 times more energy to perform the same amount of work as their peers in terms of effort, persistence, muscle control, and concentration due to the way CP affects how people move. People with CP have to work hard even when they are at rest. I frequently experience symptoms of restless legs while I sleep. This is what led me to begin taking Gabapentin as a teenager.

In my own experience, I’ve found life with CP to be exhausting. Walking around the grocery store or mall makes me feel like I’m in a road race. It feels like I’ve run a marathon when I complete a physical therapy session.

Cerebral Palsy is challenging to live with every day. Please don’t think that I’m lazy, though. It takes so much energy to function every day with CP. I’m only human and only do so much.

Sources:

“Scissoring Gait and Cerebral Palsy: Causes, Risks, & Treatment.” Edited by Barbara Brewer, Flint Rehab, Flint Rehab, 26 July 2021, https://www.flintrehab.com/scissoring-gait-cerebral-palsy/.

“Cerebral Palsy AND Post-Impairment Syndrome.” Edited by Gina Jansheski, Cerebral Palsy Guidance, Cerebral Palsy Guidance, 19 Sept. 2020, http://www.cerebralpalsyguidance.com/cerebral-palsy/associated-disorders/post-impairment-syndrome/.

Rivelis Y, Zafar N, Morice K. Spasticity. [Updated 2022 May 3]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK507869/

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