Articles, Newsletters, Podcasts, and Video

The Lives Of The Vulnerable: What Will Happen?

By Grace W. Dow / 2022-09-29
Posted in

Robin Zehntner, 31, of Montana, is a quadriplegic. PCAs assist her with tasks such as brushing her teeth or getting into bed at night. Her PCAs get paid $13.10 per hour through Medicaid. Zehntner isn’t sure when the pay was last increased. One of her PCAs recently completed graduate school and started a new job. A change that Zehntner described as both expected and upsetting. Zehntner only had two PCAs.

The Montana Department of Public Health and Human Services commissioned a study that suggests increasing Medicaid reimbursement rates. The report, dated July 2022, stated that Montana needs an additional $82.4 million to reimburse providers at recommended rates and to account for service expansion.

Unfortunately, Zehntner is one of the millions of disabled Americans who can’t find home health care workers. Nationwide there is a shortage of staff. Families can’t find home health nurses for their medically fragile children, and elderly people can’t get the help they need at home.

Weston Clardy, 7, of Easley SC, has Cerebral Palsy. He has no use of his extremities. He is nonverbal. He needs a machine to assist with breathing and is fed through a feeding tube.

Joshua Bower was born in 2019 after a routine pregnancy and delivery. By four months, though, he was experiencing issues breathing and eating. He was barely 11 pounds at six months old, unable to sit up or roll over, and unable to control his head or neck. He was later diagnosed with Cerebral Palsy. Because their medically complex conditions require specialized care, South Carolina’s Medicaid program approved both children for private duty nursing.

However, the organizations who offer that service claim that although nurses can earn far more money in other health-related fields, they are finding it challenging to hire and keep employees due to the low reimbursement rate and national nurse shortage.

Aaron Bower, Joshua’s father, told Indexx Inc., the company that publishes Greenville Business Magazine, Columbia Business Monthly, and Charleston Business Magazine, “The pay gap is so extreme.” The majority of Weston’s nurses, Stephanie Clardy, said, “said they can’t make a living (on what they’re being paid).

In Minnesota, an elderly couple can’t find home healthcare workers which has left them reliant on each other. Acey, 85, is the healthy one, the organized, enthusiastic caretaker for her 88-year-old husband, Tom. In July, after a long day of showering, dressing, feeding, and taking him to doctor’s appointments, Acey became so exhausted that she had to go to the emergency room. The Hofflanders attribute Acey’s health crisis largely to the absence of qualified in-home care.

The couple spent the majority of this year waiting to be assigned a qualified home-care worker due to a nationwide shortage of workers that was made worse by the COVID-19 pandemic. Acey was left to shoulder the load alone for a period of four months, from April to August, because they were no homecare workers available.

I live with Cerebral Palsy and have experienced this shortage firsthand as well. Finding PCAs to assist me while I was in college was a challenge. There were numerous ways I tried to hire staff. I put an advertisement on Craigslist. My mom posted on social media and contacted the local community college’s nursing program. Ultimately, I went through three different PCAs in three semesters.

The shortage is affecting millions of people across the United States. People from Minnesota to Montana are struggling. This crisis is affecting people who are 5 to 85. People’s lives are at risk without proper care. We need to fix this crisis now because care can’t wait.


Osby, Liv. “South Carolina’s Nursing Shortage Hits Families with Disabled Children Especially Hard.” Greenville Business Magazine, Indexx Inc, 21 Sept. 2022,

Rowland, Christopher. “Seniors Are Stuck Home Alone as Health Aides Flee for Higher-Paying Jobs.” The Washington Post, WP Company, 25 Sept. 2022,

Szpaller, Keila. “Medicaid in-Home Care Client Fears Losing Independence with Low Rates.” Daily Montanan, Daily Montanan, 28 Sept. 2022,


The Problems With Vocational Rehabilitation:

By Grace W. Dow / 2022-09-28
Posted in

Last week, one of my doctors suggested I contact the Massachusetts Rehabilitation Commission. She wanted me to see if I could find work with their help. Vocational rehabilitation is available nationwide. The program is designed to help people with disabilities find a job.

I began working with my local vocational rehabilitation agency during my final year of high school. Unfortunately, their services did not meet my expectations. It was challenging to contact the three counselors I worked with because of the high staff turnover.

Nationwide, problems affect vocational rehabilitation agencies. Wendy Thompson of Queens, NY, always knew she wanted her son to attend college. Still, she had no idea how many people would disagree with her. Her son was diagnosed with Cerebral Palsy at birth. In 2013, he received his high school diploma.

When Thompson met with a counselor from the local vocational rehabilitation office, the counselor refused to sign off on her son’s plan to attend community college. As a result, he would not receive voice-activated software, wheelchair-accessible transportation, or tuition assistance for which he was eligible under federal law.

Thompson’s son is far from the only person who struggled to receive services. A VR counselor in Ohio believed that a woman with a physical disability known as spina bifida could not handle college and turned down her request for assistance. She completed her associate’s degree. When she returned to the VR office to seek assistance for a bachelor’s degree, she was again denied assistance. It took a lengthy appeal, but she eventually won and received the help she required. She graduated two years later and got a job as a social worker.

According to federal data, more than 800,000 people with disabilities who were eligible for services did not receive support between 2010 and 2014. Over a dozen states failed to offer services to more than 40% of qualified people.

Vocational rehabilitation agencies across the country struggle due to a lack of funding. After adjusting for inflation, federal funding for VR has decreased by 6% since 2009. In addition, 21 states did not provide enough state money in 2015 to receive the full amount of federal matching funds.

Tennessee’s VR agency temporarily stopped accepting new clients in January 2015. Despite the fact that it reopened, a state investigation revealed that 100 of the 243 roles that directly serve clients were unfilled in 2015. According to advocates, the result has been caseloads of up to 200 in Knoxville and elsewhere, as well as many lost clients.

Vocational rehabilitation agencies are an excellent idea in theory. However, budget cuts and staff turnover mean many people can’t receive services. People with disabilities miss valuable opportunities due to VR agencies’ ineffectiveness. In the future, I hope more people can receive help from this program. I am disappointed that millions of people like me can’t get the help they need from vocational rehabilitation.


Kolodner, Meredith. “Problems Plague Vocational Rehabilitation.” Disability Scoop, Disability Scoop, 21 Sept. 2016,


The World Wasn’t Made For Me:

By Grace W. Dow / 2022-09-27
Posted in

Jeremy Klemin recently published an article in the New York Times. Both of his parents have Cerebral Palsy. He discusses how his parents have become “hackers” to make living in an inaccessible world easier.

A bungee cord was hooked to the ceiling at the local accessible gym, allowing his mother to walk on a treadmill with less resistance. She also wrapped the remote that controls her van’s wheelchair lift around the narrow metal pole of the driver seat’s headrest to reach it without getting out.

Over the years, I’ve learned how to use various strategies to make life with CP easier. In my apartment, assistive devices make it easier for me to be independent. In the bathroom, I have bars on the toilet to help ensure that I don’t lose my balance. A bidet makes it easier to use the toilet as well. We have a smart lock and video doorbell as well. My bed is electric, which allows me to change positions on my own. I also have a pager attached to my bed so my PCA can help me in the middle of the night.

Getting dressed is a challenge for me as well. My clothes are easy for me to put on and take off. I don’t wear pants with buttons or zippers. This means I don’t have to wait for someone to help me. I wear slip-on shoes and Billy brand shoes with my AFOs. The zipper makes it easy to get my shoes on and off.

Assistive technology helps me do more on my own. Every day, I check my emails, do online banking, write, read, and watch movies on my iPad. Additionally, I create shopping lists and place orders for supplies for the house using my Amazon Alexa. I can send emails and text messages with Siri on my iPhone. Telehealth allows me to see medical providers without leaving my apartment. Cerebral Palsy prevents me from driving, so telehealth means I don’t have to rely on my PCA to go to the doctor’s office.

Since I was in elementary school, I have used a program called Bookshare. At the touch of a button, I can access thousands of books. I can read everything from a cookbook to a murder mystery. I can read without any physical barriers. Bookshare allowed me to read the same books as my classmates in school. E-books have enabled me to read far more than traditional print books. I don’t have to worry about inaccessible reading materials, and I am more independent.

Cerebral Palsy means that I have to be creative when living my life. I may not achieve my goals in a typical way. Living in an inaccessible world is hard at times. Creativity and ingenuity allow me to do what I want to do. I am thankful that creativity makes living with CP easier.


Klemin, Jeremy. “My Parents Are Hackers out of Necessity.” The New York Times, The New York Times, 25 Sept. 2022,


The Caregiver Shortage Is Global:

By Grace W. Dow / 2022-09-26
Posted in

It’s no secret that there is a caregiver shortage throughout the United States. However, there is also a shortage in other countries. In England, many disabled people are struggling to find PAs as they are known. Baroness Jane Campbell, a cross-party peer, and others have struggled to get PAs in recent years. The Baroness lives with spinal muscular atrophy and uses a wheelchair.

All across England, disabled people can’t find PAs. Anna, who needs a wheelchair due to an energy impairment, has been given a budget for 35 hours of PA help each week. Since her last PA left in June, she has been unable to find a replacement. The lack of PAs also has an impact on personal hygiene and well-being. Anna showers once a week on her own without assistance from a PA. since she lacks the energy to do it more frequently.

Many people point to one specific event in recent history that they believe impacted the landscape of PA work and availability – Brexit. PAs are no longer permitted to work in the UK. They are not currently recognized as “skilled workers.” According to Baroness Campbell, “We need workers from Europe to be able to return to this country to make up the shortage of personal assistants.”

The LGA discovered that low pay or a lack of sick and holiday pay were some of the primary reasons people left their jobs. Because of the high turnover, recruitment may be ongoing. Unfortunately, this problem goes beyond England. In college, I went through three PCAs in as many semesters. My mom and I posted advertisements on Craigslist, Facebook, and the statewide PCA database.

In England, there is little interest in becoming a PA. Katy Etherington says: “We’ve seen PAs say that they’ve left to go and work in a coffee house or as a dog walker because they earn more.” People can sometimes make more working at a fast food restaurant in the U.S as well. Workers can earn equal or better wages at Home Depot or McDonald’s for far less difficult jobs than bathing, dressing, and feeding people.

Low wages are an issue in the United States as well. According to the Bureau of Labor Statistics, PCAs and other home healthcare workers in the US are only paid $13.02 per hour. One out of every five home care workers, according to the New York Times, lives below the federal poverty line, and they make an average of $11 per hour in six states.

Disabled people around the world rely on home health care workers. They allow people like me to live where we want to, go to work, and go to concerts and other events in our communities. Without them, millions of people would be forced into institutions. The shortage needs to be fixed now because, for millions of people worldwide, care can’t wait.


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,

“Home Health and Personal Care Aides: Occupational Outlook Handbook.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 8 Sept. 2021,

Rose, Beth. “Disabled People Fear Shortage of Personal Assistants and the Loss of Independence.” BBC News, BBC, 2 Sept. 2022,

Rowland, Christopher. “Seniors Are Stuck Home Alone as Health Aides Flee for Higher-Paying Jobs.” The Washington Post, WP Company, 25 Sept. 2022,


Sports Bring Me Joy:

By Grace W. Dow / 2022-09-25
Posted in

As far back as I can remember, I’ve loved sports. I have fond memories of attending Boston Red Sox games as a child. I looked forward to cotton candy, peanuts and a trip to the team store to buy souvenirs. I even named my dog after my favorite player.

While baseball is my favorite sport I enjoy others as well. I enjoy basketball and hockey in particular. I love watching the Boston Celtics and the Golden State Warriors. I’ve seen a couple of Celtics games live. During hockey season, I watch as many Pittsburgh Penguins games as I can. Although the Penguins aren’t my hometown team, I like Sidney Crosby.

When I was young, I played baseball through a program called Buddy Baseball. I liked being around other people with disabilities. I also played sled hockey as a teenager. I met people with various disabilities through sports. Massachusetts has ample recreation opportunities available for disabled people. I felt like I belonged while playing sports.  I also took martial arts for several years.

Sports have lifted my spirits during some tough times. When I went to St. Louis for my Selective Dorsal Rhizotomy, I watched the postseason series between the Boston Red Sox and St. Louis Cardinals. I began collecting baseball cards after another operation.

I’ve always enjoyed sports. Sports have been a constant in my life. I am grateful for the memories sports have given me. I’ve made some wonderful relationships through sports as well.


For Disabled People, The Pandemic Isn’t Over:

By Grace W. Dow / 2022-09-24
Posted in

CW: Death & Eugenics:

President Joe Biden declared the coronavirus pandemic to be over in an interview that aired on Sunday, following more than a million deaths in the US and nearly three years of lockdowns and economic disruptions.

For disabled people, however, the COVID-19 pandemic is far from over. Those with disabilities have faced numerous challenges throughout the pandemic. According to a report released in October 2021 by the National Council on Disability, a third of COVID-19 deaths between the beginning of the pandemic in the United States and March 2021 happened in facilities for the elderly and disabled. On top of that, these individuals were sometimes triaged out of Covid-19 treatments when hospital beds, supplies, and staff were in short supply.

Another study conducted before vaccines were available found that people with developmental disabilities were 3.06 times more likely to die from Covid-19, while people with intellectual disabilities were 2.75 times more likely to die, and people with spina bifida and other nervous system conditions were 2.48 times more likely to die.

As a person with Cerebral Palsy, I can’t help but consider what would happen if I ended up in the hospital with COVID-19. Would saving my life be worth the effort? Would the staff consider my life to be valuable?

Sarah McSweeney, who died in 2020, had Cerebral Palsy. A document that the employees from McSweeney’s group home brought with them baffled the doctors. It was a legal document defining the medical care that this disabled woman, who couldn’t speak for herself, desired.

The employees didn’t understand why it wasn’t a DNR. A do-not-resuscitate order is a legal document issued by a doctor saying that you do not want to be resuscitated in an emergency. The staff felt she was less valuable because of her disabilities. This is terrifying to me as a woman with CP.

The pandemic is not over yet. Disabled people’s lives are valuable and worth saving. We are people with gifts and talents who have so much to offer the world. Our disabilities don’t make us less worthy. If people in your life are still taking COVID-19 precautions please be supportive and understanding.


Garcia, Eric. “Biden Is Wrong. the Pandemic Isn’t over for Disabled Americans.” MSNBC, NBCUniversal News Group, 23 Sept. 2022,

Johnson , Alex. “’The Pandemic Is over,’ Biden Says in TV Interview.”, NBCUniversal News Group, 19 Sept. 2022,

Shapiro, Joseph. “As Hospitals Fear Being Overwhelmed By COVID-19, Do The Disabled Get The Same Access? .” NPR, NPR, 14 Dec. 2020,


Cost Of Living Crisis Affects Disabled People Worldwide:

By Grace W. Dow / 2022-09-23
Posted in

CW: Poverty:

Around six million people on disability benefits in Scotland will receive £150 to help them cope with increasing living costs, but some feel it is insufficient. £150 is equivalent to $167.

Katy Styles is a full-time caregiver for her husband Mark, who has a rare form of muscular dystrophy and will be eligible for the one-time payment. Mr. Styles requires a lot of equipment and care that relies on electricity, and their monthly bills are already higher than ever – and continuously climbing.

Some disabled people rely on equipment such as ventilators, feeding pumps, and power wheelchairs, all of which require electricity to run correctly. People can’t survive without nutrition or oxygen. Without mobility aids, people can be stuck in bed.

In the U.S, Brenna Delwisch struggled to remain awake when PG&E cut the power to her family’s isolated ranch in Northern California shortly after midnight one night in 2019. She feared her mother might die if she slept. Her mother, Michele Newton, suffered an aortic dissection. This is a rupture of the heart arteries that can be fatal—a few years ago. She also had a stroke. Since then, Newton has struggled with severe sleep apnea. She uses a CPAP at night to breathe.

Her mother, Michele Newton, suffered an aortic dissection. This is a rupture of the heart arteries that can be fatal—a few years ago. She also had a stroke. Since then, Newton has struggled with severe sleep apnea. She uses a CPAP at night to breathe.

People receiving the armed forces independence payment, constant attendance allowance, disability living allowance, personal independence payment, attendance allowance, Scottish disability benefits (adult disability payment and child disability payment), or the war pension mobility supplement are eligible for the lump sum.

Instead of the £650 Cost of Living Payment provided to those who receive other kinds of social security, those who only receive personal independence payments or the disability living allowance are awarded a £150 payment from the government. They still have other needs, though.

Life already costs more when you’re disabled, according to James Taylor, head of strategy at the disability charity Scope, who spoke to Sky News: “Even before this cost of living crisis, disabled people were facing extra costs.” These extra costs amount to about £580 a month.

Disabled people often struggle to afford necessities. Inflation has impacted millions of disabled people around the world. Scotland needs to increase disability benefits. People’s lives depend on these benefits. Without them, people with disabilities around the world could die.


Luna, Taryn, and Anita Chabria. “PG&E Power Outages Bring Darkness, Stress and Debt to California’s Poor and Elderly.” Los Angeles Times, Los Angeles Times, 11 Oct. 2019,

Norford, Olga. “£150 Disability Cost of Living Payment Not Enough to Avoid a Crisis This Winter Says Milton Keynes Charity.” Milton Keynes Citizen, Milton Keynes Citizen, 21 Sept. 2022,

Zahid, Aisha. “Warnings That £150 Extra Cost-of-Living Help for Those on Disability Benefits Is ‘Not Enough’.” Sky News, Sky News, 20 Sept. 2022,


Here’s What’s Happening at Best Buddies Living Miami!

By Drew Heinrich / 2022-09-22
Posted in

By Britney Wrightington, Residential Manager, Best Buddies Living (Miami)

Best Buddies Living Miami is the first location in the state of


Poverty Isn’t A Publicity Stunt:

By Grace W. Dow / 2022-09-22
Posted in

CW: Poverty

In Ontario, Canada, recently, some Members of the Provincial Parliament completed an experiment where they had to live on $47.61 worth of groceries a week. For a person receiving ODSP or Ontario Works, they claim that this is an “approximate two-week grocery budget.”

Since 2018, those who are ODSP recipients have received about $1,169 per month. A 5% increase would provide them an extra $58 in their pockets. According to the NDP, OW beneficiaries have not seen an increase in benefits and currently get approximately $733 per month.

As someone who receives SSI in the U.S, while the Members of Provincial Parliament may have been well-intentioned, poverty isn’t a publicity stunt. Globally, disabled people often struggle to afford food and other necessities. In the United States 22% of families with an adult receiving federal or state disability benefits experience food insecurity. In comparison, it impacts homes with a disabled adult who does not receive benefits 33% of the time. Food insecurity affects only 8% of households without a disabled adult. For those with disabilities, the poverty rate is over 26%, but for people without disabilities, it is only 11%.

Living on disability benefits is a challenge. I receive $871 a month. Most of that amount goes to my rent. Without my best friend’s help, I might not have essentials such as laundry detergent, toilet paper, soap, or body wash. Trips to the movies and meals out are a rarity for me.

Living in poverty is a daily struggle for many of us who are disabled. We shouldn’t struggle to live. Many people have empty refrigerators, unpaid bills, and no money left over at the end of the month. Disability benefits need to provide a livable income.


Cahill, Rachel M., and Laura J. Samuel. “Food Insecurity in the Disability Community: Disparities in Snap Access: .” Health Affairs, Health Affairs , 17 May 2021,

DeClerq, Katherine. “Ontario MPPs Go on ‘Social Assistance Diet’ to Show Why ODSP Needs to Be Increased.” CP24, CP24, 6 Sept. 2022,


We Need More Help:

By Grace W. Dow / 2022-09-21
Posted in

CW: Abuse, Neglect, Death, & Institutionalization:

In most of the United States, Mike Lee’s way of life has disappeared. Lee, 57, has lived at the Glenwood Resource Center, in Iowa, a state-run facility for adults with intellectual or developmental disabilities, for 44 years. He has autism and epilepsy, and his parents determined when he was 13 that he needed the structure and constant supervision that the facility provided.

Since the late 1960s, the number of Americans residing in such institutions has decreased by more than 90%. Seventeen states have closed all of their large public institutes for disabled persons. According to a University of Minnesota researcher, only five states haven’t closed any – Iowa, Nebraska, South Carolina, Utah, and Wyoming.

The Glenwood Resource Center in Iowa is closing due to a series of controversies. Allegations included that poor medical care resulted in many deaths and that managers planned unethical research on residents. According to state inspectors, a 30-year-old resident of the facility died in June due to acute dehydration after staff failed to monitor his fluid intake.

Top administrators were fired. As claims of inadequate care persisted, the Department Of Justice launched an investigation. Federal investigators found that Iowa had violated the legal rights of Glenwood Resource Center residents and relied too heavily on institutional care.

Olmstead v. L.C. was a landmark Supreme Court case decided in June 1999 that required states to eliminate unnecessary segregation of individuals with disabilities and to ensure that people with disabilities receive services in the most integrated setting appropriate for their needs.

In order for disabled people to live in their communities, more support is needed. In college, I struggled to find reliable PCAs. I went through three different people in three semesters. They were frequently late, didn’t have reliable transportation, or didn’t show up. This meant that my mother and a friend often took me to college.

Nationwide, there is a shortage of support staff. This is in part due to low wages. Sometimes, people can make more money working at a fast food restaurant.

PCAs and other home healthcare professionals in the US are only paid $13.02 per hour, according to the Bureau of Labor Statistics. According to the New York Times, home care employees in six states earn an average of $11 per hour, and one in every five of them lives below the federal poverty line.

All disabled people deserve to live in their communities rather than being institutionalized. We need to fix the caregiver shortage now. People’s lives depend on their support staff. The care that people like me need can’t wait.


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,

“How Two Women Changed Thousands of Lives.” Disability Rights Texas, Disability Rights Texas, 17 June 2019,

“Home Health and Personal Care Aides: Occupational Outlook Handbook.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 8 Sept. 2021,

Kauffman, Clark. “State-Run Glenwood Resource Center Fined for Resident Death.” Iowa Capital Dispatch, Iowa Capital Dispatch, 9 June 2022,

Leys, Tony. “As Institutions Close, Families of Longtime Residents Face Agonizing Choices.” Disability Scoop, Disability Scoop, 21 Sept. 2022,