Posts in Family Stories
Vacations Can Be Accessible and Enjoyable (by Grace Dow)

Grace at Nauset Light Beach in July 2014, wearing a black and purple swimsuit.

This time of year brings back lots of memories of family vacations. Cerebral palsy means that accessibility is a priority on vacation. Our family enjoyed trips to Cape Cod, Maine, and New Jersey when I was growing up. Planning an accessible vacation can be challenging, but it is possible.

Finding an accessible place to stay is often difficult. Growing up, we often stayed with family members when we went away. Many of my relatives have houses that are older, and not built with accessibility in mind. It was easier to navigate inaccessibility when I was younger.  However, it has become more challenging to stay overnight with my relatives as I have become an adult. 

For example, as a child it was easy for someone to carry me upstairs where the bedrooms were. As I grew up, this became uncomfortable and dangerous. I became self-conscious about being carried in front of everyone else as well.

Staying in hotels can be challenging for some people. Many hotels have a certain number of accessible rooms available for guests, so be sure to check in advance. However, meeting accessibility standards and being accessible are often two different things. In my experience, finding a hotel room with a roll-in shower is particularly challenging. Always ask about these issues and others when you book an “accessible” hotel room. 

Accessible tourist attractions are sometimes hard to find. I no longer enjoy going to the beach, despite enjoying it when I was younger. As I have grown, it is much more difficult for me to be carried on the beach. Mobility devices are typically not designed for use in the sand or other rough terrain. 

Grace petting a dolphin at Miami Seaquarium in August 2016

Nowadays, I enjoy indoor attractions such as museums. One of my favorite museums is The National Baseball Hall of Fame and Museum located in Cooperstown NY. The exhibits are accessible, and the museum itself has plenty of room to navigate. Unfortunately, the town of Cooperstown doesn’t have many accessible restaurants or shops–so be sure to do some research in advance about the towns you may visit. Simply googling “accessible travel” plus your destination may yield helpful results.

I also enjoyed the Whydah Pirate Museum located in West Yarmouth MA, which is accessible. It was more interesting than I thought it would be. I enjoyed seeing old artifacts that were only discovered in the 1980s, after the ship’s remains were found.

I also prefer to go on vacations when the destination is easy to get to by car. Several years ago, I went to Florida with my mom and younger sister. We had a wonderful time, but the plane ride was hard for me. During the flight, the differences in altitude caused my spasticity to increase. 

In addition, traveling on a plane is often challenging for disabled people who require mobility devices. Airlines frequently damage wheelchairs when storing them on the plane. I have never taken my wheelchair on a plane, because I don’t want to risk it getting damaged or lost. The U.S. Department of Transportation has a list here of the rights of disabled travelers using airlines, as well as additional travel resources. In addition, Amtrak has significant resources for disabled travelers. 

Vacations are a wonderful way to enjoy the warm weather. Planning an accessible vacation requires creativity and research. You can find groups on Facebook to help you plan and give you ideas for fun vacations! An accessible vacation can leave you with memories that last a lifetime. 

Grace Dow is a writer from Massachusetts who focuses on disability rights issues. In her free time, Grace enjoys seeing her friends and family. She also enjoys reading, and following her favorite sports teams.

Family Stories, ReflectionsJeneva Stone
Medicaid & IDEA--What's at Stake: Grace Dow (Massachusetts)

Grace (l) with her sister (r) at Thanksgiving dinner..

The current bipartisan deal sets spending caps on essential and already underfunded programs, including Medicaid and education for kids with disabilities, that impact millions of Americans – including our Little Lobbyists families. As the budget process moves forward, here’s what’s at stake for Grace Dow:

I am a writer and disability advocate who has cerebral palsy. On my blog, I share personal stories as well as information about various disability rights issues. In the future I hope to become a published author. In my spare time, I enjoy reading, watching movies and following the Boston Red Sox and Pittsburgh Penguins.

I have Cerebral Palsy and I was born prematurely in India. I rely on a walker and a wheelchair for my mobility. Currently, I have private health insurance and Medicaid. Medicaid provides coverage for home and community-based services. Home and community-based services have allowed me to live in my own apartment since 2020. This was a dream come true for me. I am able to be an active member of my community because of Medicaid. I enjoy going to the movies, the grocery store, sports games, and traveling. None of this would be possible without Medicaid. Without Medicaid I would rely on my parents to provide all of the care I need or risk being forced into a long-term care facility.

While we’re grateful the Biden Administration successfully protected Medicaid from being cut, it is already deeply underfunded. At least a million people are already on waiting lists for Home and Community-Based Services (HCBS), medical costs continue to rise, and care for our families could be compromised. How would that affect you?

Grace bending down to touch a dolphin at an aquarium.

Medicaid cuts would be devastating to me. Without Medicaid, life as I know would be gone. I would lose my PCA (personal care assistant) services. Additionally, I would have to move back home with my parents. I would rely on them to provide all of the care I need or risk being forced into a long-term care facility.

The Individuals with Disabilities Education Act (IDEA) has NEVER been fully funded. Currently, the Federal government pays only 16% of IDEA costs. Capping spending at less than the rate of inflation will mean fewer special education teachers and inclusion personnel in already struggling classrooms. How would that have affected you when you were younger? And how will that affect children today?

IDEA allowed me to attend public school. I loved school and had wonderful teachers. I was fortunate to have a wonderful paraprofessional whom I worked with for a decade. Without IDEA, I wouldn’t have received the support I needed at school. I was able to go on field trips, and participate in all kinds of activities in the classroom.

Republicans claim capping spending is necessary to cover the U.S. deficit, but that’s just not true. House Republicans have  introduced legislation to make permanent the “Trump tax cuts” that will cost the U.S. $1.7 trillion by the end of this year. 

Our kids with disabilities shouldn’t be asked to cover the U.S. debt to pay for the cost of tax cuts to the ultra rich. We can’t let that happen.

Family Stories, HCBS, IDEA, MedicaidJeneva Stone
Inclusive White House Easter Egg Fun! 
Inclusive White House Easter Egg Fun! 

A boy wearing sunglasses holds a colorful spoon as he rolls an Easter egg down his lane on the White House lawn.

On Monday, April 10, some of our Little Lobbyists families were invited to attend the first-ever disability-friendly Easter Egg Roll! We are grateful to the White House, First Lady Dr. Jill Biden, and the White House Office of Public Engagement, especially Senior Advisor Anna Perng (a fellow member of the disability community), for all of the hard work that made this day possible.

In the past, large crowds, loud noises, inaccessible terrain, and few accommodations or adaptive activities made the annual White House Easter Egg Roll – an event that dates back to 1878 – challenging for our families to participate in or fully enjoy. This year First Lady Dr. Jill Biden, whose office plans and hosts the event, wanted to do more to prioritize inclusion, so the White House reached out to partners in the disability community and asked us to share our experiences and suggestions. Little Lobbyists was thrilled for the opportunity to work with the White House Office of Public Engagement to help ensure the success of this first-ever event – inclusion is central to our mission and we love to see our kids have FUN! 

This year, many steps were taken to help kids with disabilities (and their families!) participate in the White House Easter Egg Roll. They included:

  • A sensory-friendly session: Each year, the White House welcomes over 30,000 people to the Easter Egg Roll! It is VERY crowded, loud, and busy – which can be too overwhelming for many of our kids. To address this, the White House created a new, earlier session (from 7-9 am) for a smaller number of participants given tickets through a variety of disability-related organizations. Louder musical events were also postponed until later in the day.

  • More accessible grounds: The Easter Egg Roll takes place outdoors on the lawn of the White House. It’s a pretty spectacular back yard, but the uneven terrain can be difficult for people with mobility challenges. To make it easier, wheelchair and walker-friendly pathways were put in place throughout the grounds. There were also more accessible bathrooms, including family bathrooms, and places for changing larger kids and adults as needed. 

  • Adaptive equipment and activities: There were beeping eggs for those who are blind/low vision, hockey sticks and grab-arm devices to help those with mobility needs reach the eggs, spinning lego robot egg decorators (so cool!), and more.

  • Volunteers and helpers: The army of volunteers is always amazing, but this year there were additional volunteers trained to help people with disabilities – including students from the nearby George Washington University studying to become Occupational, Physical, and Speech Language Therapists. Disability-support volunteers wore buttons to help families identify who they could ask for help and accommodations.

Our kids rolled and hunted eggs, met their favorite cartoon characters, posed for photos, participated in physical education activities, STEM projects, and and arts-and-crafted to their hearts’ content! We all left with smiles on our faces and our hearts full. We were excited to see many of the things our families suggested put in place, and the White House has already asked us to provide additional feedback on how they can make the event even better next year.

When the First Lady and President Biden greeted the assembled egg-rollers later in the morning, the President proclaimed “Welcome to the White House —YOUR house!”

Little Lobbyists know that kids with disabilities BELONG in their communities. We are grateful our President, First Lady, and White House understand this, too.

We hope you enjoy the slideshow below sharing all the fun we had! We encourage the White House to continue building on their efforts to be inclusive, and we encourage everyone everywhere to bring people with disabilities and their families to the table to make their own backyards, communities, and events more inclusive. Just look how much fun it can be! 

Hover your cursor over the photos to read the image descriptions in the captions!

Family Stories, Federal Issues, NewsJeneva Stone
Why Carly Bloomingdale Is a Little Lobbyists Voter in Georgia!

Carly (l) and Grant (r) at the beach, standing at the shoreline. Grant wears a black, silver and neon-green swim suit. Carly wears a gold t-shirt and black skirt.

We want YOU to be a Little Lobbyists voter! We’re down to the last big race of 2022, the Senate run-off in Georgia, but we’ll be gearing up soon enough for 2024. So take our pledge to vote for candidates who will protect and expand the rights of children with complex medical needs and disabilities. We have to elect more candidates to office who share our belief in equity, accessibility, and inclusion to remove barriers and advance the policies our families need.

Voting is one of the most powerful ways to make your voice heard and make our country – from County seat to the U.S. Capitol – the more just and inclusive place ALL our children deserve, but we can’t do it without your vote. 

Take the pledge to be a Little Lobbyists Voter.

Here’s a story about Carly and Grant, who live in Georgia:

I’m mom to Grant, a smiley and affectionate five-year-old. Grant loves to swing at the park, swim at the pool with his fellow Angelfish, and play in the waves at the beach. When he's not enjoying activities outdoors, Grant can be found doing the Hot Dog Dance with Mickey and Toodles from Mickey Mouse Clubhouse, his absolute favorite show. Grant gives the best high fives, hugs, and fist bumps! 

Shortly after he was born, Grant was diagnosed with Total Intestinal Aganglionosis Hirschsprung’s Disease, a digestive disease that requires him to receive IV nutrition through a central line. He also has a g-tube and a jejunostomy. When he was two, Grant was diagnosed with Autism Spectrum Disorder and is nonspeaking–he communicates with picture exchange and will soon use an adaptive communication device.

Grant spent a total of 97 days in the NICU when he was born. Because Grant was on a continuous IV with a central line, we couldn’t go home from the hospital without in-home nursing lined up. Both my husband and I worked and would not be able to take care of Grant without a nurse. To get in-home nursing for Grant, we needed Georgia’s Katie Beckett Medicaid waiver. It took quite a bit of time and people to make it happen, but Grant was finally able to get the medical care he needed to go home.

Grant’s life was enhanced significantly thanks to Georgia’s Medicaid waiver coverage, and we are so grateful for the folks who helped us navigate a difficult process in a time of need.  But parents of medically complex children shouldn’t have to worry about how they are going to care for them when they come home.

That’s why we are Little Lobbyists voters and Health Care Voters who are excited to vote (again) for Senator Raphael Warnock in the runoff election. We need more leaders like Senator Warnock who will work to make sure caregivers of medically complex children are able to get the necessary care for their loved ones. Georgia is seeing more hospitals close their doors and many parts of the state without adequate numbers of healthcare providers. We need elected officials who will fight for kids like Grant to have the best care and the best lives.

VOTE!, Family StoriesJeneva Stone
Supporting Your Disabled Child In Adulthood (by Grace Dow)
Grace Dow (r) with her young sister (l) at Grace’s high school graduation party. Grace wears a red shirt and her sister a blue shirt. Both women have dark skin and dark hair. They are in a room set up for a party with red and blue balloons and tables

Grace Dow (r) with her young sister (l) at Grace’s high school graduation party. Grace wears a red shirt and is using an adaptive walker, and her sister a blue shirt. Both women have dark skin and dark hair. They are in a room set up for a party with red and blue balloons and tables covered with white table cloths.

Adulthood is a challenging time for most young adults and their families. For adults with disabilities and their parents, it’s extra challenging. As an adult with Cerebral Palsy, adulthood has been more challenging than I’d imagined. Luckily, my parents have been supportive. I am lucky to have a large, extended family as well.

My parents made sure that I knew what Cerebral Palsy was when I was young. I knew that I was different from most of my peers when I was growing up. An emphasis was always put on my strengths, and while this was helpful, I wish that I'd had a better understanding of how Cerebral Palsy would affect everyday life. It is essential to let your child know that they may have challenges and limitations as well. I was unaware of how my disability would affect adult milestones such as employment and marriage.

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. 

As I grew up, though, I had lots of questions about my future. I knew that I wanted to have a career. I wanted to live on my own one day. I even hoped to get married. I had goals, but had no idea how to achieve them. My parents encouraged me to follow my dreams. They helped me explore different careers, and what I might be interested in doing in the future. In my senior year of high school, I began working with my local vocational rehabilitation office. Unfortunately, their services didn't work well for me. High staff turnover led to me working with three different counslers, and it was difficult to get in touch with them.  Figuring out what kind of career I want to pursue has been a challenge. Since last year, I've run a blog where I write about my experiences as someone with Cerebral Palsy. I eventually want to make writing my full-time job. Writing is one of my passions in life.

Grace Dow (l) and her best friend (r) are seated next to a table with a display about adaptive sports. The trip-fold display has many photos and descriptive text boxes on it. Grace is wearing a white button-down shirt and has dark skin and dark hair. Her friend is wearing glasses, a winter hat and coat and has light skin and light hair.

One of the most important things my parents have done since I have become an adult is help me navigate life as a disabled adult. I knew very little about independent living and what it would look like. My parents made me aware of resources such as the local independent living center. I also received a laptop computer through United Cerebral Palsy. I moved out two years ago, and my parents were nervous. They provided many of the furnishings and other equipment for my apartment which included a bath bench, an electric bed, and a new dresser.

For me, figuring out healthcare has been difficult. I received a new power wheelchair last year, and it was a complicated process that took over a year. My parents helped throughout the process, but they didn’t do the work for me. They helped me write an appeal to my private insurance company and fundraise for the seat elevator. Before turning 18, my parents did all of the advocacy on my behalf. They wrote letters and made phone calls to insurance companies. Back then, I was glad that I didn’t have to figure it out on my own.

My parent's role in my life has changed since I became an adult. They are now supporting me rather than doing things for me. I am fortunate to have two parents who have always been loving and supportive.

The transition to adulthood is a challenging time for everyone. It is even more difficult when your child has a disability. With support, adults with disabilities can live their lives to the fullest.

Grace Dow is a writer and advocate for those with disabilities. She lives in Massachusetts. In her free time, Grace enjoys reading, watching movies, and being with her friends and family. Please visit Grace’s blog!

Family Advocacy, Family Stories, ReflectionsJeneva Stone