Jenny takes a selfie in one of the California Assembly buildings in Sacramento. She wears her trademark bright pink glasses, as well as a bright pink blazer. Behind her are the ornate columns, gates and tile floors of a legislative building.

Hi! I’m Jenny McLelland and I’m the Director of Policy for Home and Community-Based Services for Little Lobbyists. My family lives in Clovis, a small city in the agricultural Central Valley of California. My husband is a physical education teacher, and I’m a retired police officer. We have two teenage children - Josephine and James.

In my role as Director of Policy for Home and Community Based Services, I get to help turn family stories into solutions. That means I’ve had to learn a lot about Medicaid Home and Community-Based Services waivers. Medicaid HCBS Waivers are the legal framework that pays for children like my son to get nursing care at home. I want to make sure that any child who needs nursing care at home can get it, like my son James.

I got involved with Little Lobbyists because of my 13-year-old son James. He’s a really fun kid. He gets good grades, he plays percussion in the school band, and he loves 3D design and printing. James has a rare genetic disorder that affects his airway and breathing, so he has a tracheostomy (a plastic tube in his neck) to help him breathe and he uses a ventilator at night. 

My biggest priority as an advocate is to make sure medically complex kids have access to nursing care at home. My son spent most of the first year of his life in an institution because we couldn’t get the support we needed to bring him home - I don’t want that to happen to anyone else.

James (l) and Jenny (r) pose in a hospital room at discharge. Jenny is wearing bright pink eyeglasses and has chin-length blonde hair. James is wearing a sage green Pokemon shirt and holds a paper shopping bag and a robot. Behind them are an unmade hospital bed, and a variety of medical equipment and monitors.

There are two equally important sides of advocacy: telling stories that help people understand what life is like for disabled kids, and using those stories to solve problems.  Little Lobbyists does a great job of helping families tell their stories in a way that puts a human face on a complicated policy.

When I first got involved in advocacy in 2016, it was as a storyteller, working to save the Affordable Care Act. James benefited from a provision of the ACA that banned health insurance companies from imposing “lifetime limits” on medical care. Because James spent most of the first year of his life in the hospital and in a nursing home, he exceeded the cost that would have been his lifetime limit when he was only a few weeks old.

As I got more involved, I realized that what I really love is the details. I like reading the details of Medicaid Home and Community Based Services waivers–these are the state programs that give kids access to Medicaid services at home. While the federal government establishes a general set of rules, every state designs its own programs, so figuring out what the rules are for your state can be confusing. I like helping people figure out what’s going on with their own state waivers and figuring out who to contact to fix things.

You can reach out to me at jenny@littlelobbyists.org to talk about:

• How can Medicaid help disabled kids live at home with their families.

• What other programs help disabled children access their full civil rights in the community.

• How Medicaid can help disabled young adults who are aging out of the pediatric care system.

I’m excited to work with the team at Little Lobbyists so that our kids can write their own stories!

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Jenny McLelland is Little Lobbyists’ Policy Director for Home and Community-Based Services.

Isra’El (l) & Rico (r) Winston. Father and son, they are two Black men wearing gray suit coats with Little Lobbyists t-shirts underneath. They stand on a street in Washington, DC.

This spring, PBS aired Understanding Autism, a documentary by filmmaker Scott Steindorff, who was diagnosed with autism as an adult. Steindorff wants to reframe the conversation about autism by focusing on the incredible talents and personalities of autistic people. The film is a rewarding and refreshing look at neurodiversity. 

Little Lobbyists Isra’El Winston and his dad Rico were tapped to share their story. I wanted to know more about how they got involved, what they learned, and how this advocacy experience changed them.  

You can watch Understanding Autism on the PBS website through May 2027. 

How did you get involved with the film project? 

Rico: Isra’El and I became involved with the film project through Dr. Rebecca Landa, Vice President of the Kennedy Krieger Institute. She is also Founder and Director of

CASSI (Center for Autism Services Science and Innovation) at the Kennedy Krieger Institute.

I was impressed by the positive way in which autism is presented in the film. Too often in mainstream media productions, disability is presented as tragic. What do you feel are the biggest positives about autism? And why?

Rico: I believe that the biggest positive for myself about autism is the fact that I have found my life‘s purpose and calling because my son has autism. I have grown to learn the significance of advocacy and accepting the individual differences in all individuals, and celebrating their individuality.

What was it like to work with the director, Scott Steindorff, who is autistic himself? What did you most appreciate about his approach?

Rico: One of the noteworthy facts is that Scott Steindorff himself is autistic. I truly appreciate that by him being autistic himself, he understands the challenges–whether it’s the mountain top highs or the valley lows–when it comes to autism acceptance and even self acceptance.

What were your favorite parts of the film? And what were your favorite parts of making the film?

Sneak Peek YouTube video for the film: Rico is hugging Isra'El. They are seated on a couch against a window. To view the entire film, click here.

Rico: My favorite part of the film was listening to the amazing journeys of each uniquely, individually designed and created participant. My favorite part of making the film was it provided us the opportunity to share our journey of love as we navigate, for myself, loving a child who has autism, and, for my son, navigating his own individual journey and self-awareness and celebrating his uniqueness.

Isra’El: My experience was a little uncomfortable. Talking about my experience made me a little sad. What I did like is that I realize that by me sharing what I have gone through, that will help other children. 

One thing that was so different was the makeup artist preparing my face to be filmed.

What are the main takeaways you hope viewers will have after watching?

Rico: I hope that viewers’ hearts are touched by the strength and resilience and the love which the documentary shares: that each and every one of us deserves to be celebrated,  regardless of our differences and our unique individuality, because, after all, that is exactly what makes each of us special.

Isra’El: I would want people that watch the documentary to understand that simply because people are different isn’t a bad thing, because we all are different, and because we all are different is a good thing, and that is what makes me special and everyone special.

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Isra’El Santíago Winston is a Super Hero Advocate. Isra’El has over 8 years of experience in autism and disability advocacy. He initially began advocating for himself during his IEP team meetings at the age of 6. In partnership with his father, Isra’El began his journey advocating for children with disabilities and their families. Isra’El has participated in numerous radio, television and news networks interviews, including NPR, Baltimore Sun, HBO Cinemax Urban Action Showcase, PBS, ABC and Fox News. Isra’El enjoys horseback riding working on science projects, traveling, and most of all being a Super Hero Advocate!!

Rico Winston is the single parent of an amazing 14-year-old, Isra'El. His son, Isra'El, has a diagnosis of ASD. As Isra'El and Rico traveled together along their journey of love navigating life with autism, Rico discovered his life's purpose; to serve others with autism. He currently serves as a member on the Friends of CASSI family support group at the Center for Autism Services, Science and Innovation (CASSI*™) at Kennedy Krieger Institute. Rico also holds membership on the Scientific Advisory Board and Community Advisory Council with SPARK for Autism - Simons Foundation. He is a member of the Board of Directors for The Arc Baltimore, chairperson of The Arc Baltimore Governmental Affairs Committee, and board member for the PCORI NYU Science of Engagement Community Advisory Board. Rico is also a member of Little Lobbyists, a national organization advocating for children with complex medical needs and disabilities. He is a graduate of Maryland's Partners in Policymaking (2020), and serves as Director of Community Outreach at The City Ranch Inc., Baltimore, MD.

Jeneva Stone is the Little Lobbyists blog manager.

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. 

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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.

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.

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!

Posing with the Easter Bunny

A family poses with the Easter Bunny with the White House in the background

Rolling Easter Eggs

A boy crouches down to roll an egg using a colorful spoon

Easter Egg Champion

A boy & his mom pose in front of the White House—the boy holds up a colorful spoon used to roll the egg

White House Seal

Three children pose in front of huge Easter graphics

Hello Minions!

A boy and a large yellow Minion characters go eye-to-eye

Tossing the Football

A boy cocks his arm to throw a football on a large playing field

White House Photo

A boy and his mom pose in front of the White House, which is decorated with colorful Easter banners

Meet the Minions

A boy and his dad pose with two of the big yellow cartoon characters in front of a tent—the boy is a wheelchair user

Hang Out with Astronauts

A mom poses with a NASA employee—she is behind a big astronaut cut-out which shows her face where the helmet is—her daughter, a wheelchair user, poses beside her.

Beeping Eggs

A girl in a sun hat holds up an Easter Egg designed to beep for those who are blind/low vision

Meet the Cartoon Characters

A family poses with several cartoon characters

White House Selfie

A mom and her daughter take a selfie in front of the White House

True Grit

A mom poses with the Philadelphia Flyers mascot, Gritty

Having Fun

Three children pose in front of the White House

Official Egg Portrait

A family poses next to large, colorful Easter graphics cut-outs—the White House is in the far background

Rolling rolling rolling

Children roll Easter eggs down lanes marked out on the White House lawn

Only You Can Prevent Forest Fires

A family poses with Smokey the Bear

Family Portrait

A family poses in front of a white picket fence with the White House in the background

Egg Decorating

Two girls in bright jackets put stickers and draw on colorful eggs at a table

Gritty for the Win

A boy poses in front of a white picket fence. The NHL mascot Gritty leans over the fence behind him.

Super Certification

Two girls, one who uses a wheelchair, pose with their activity completion certificates

Peanuts Forever

A child poses with the characters Charlie Brown and Snoopy

Robotic Eggs

A girl holds a marker as an automatic egg twirler spins an egg, making decorative lines

Super Heroes

A family, including a son who uses a wheelchair, poses with Superman and Wonder Woman beneath a large tree

Collecting a Prize

A girl who uses a wheelchair collects her prizes from the Easter Egg hunt

Super Snoopy

A mom poses between cartoon characters Snoopy and Charlie Brown

Waiting for Go Time

Four children pose on a street corner outside the White House, waiting to be let into the event.

Peanuts Forever

A family poses with Snoopy and Charlie Brown

Meet Tigger

A young man meets Tigger and Winnie-the-Pooh. You’re never too old

Easter Egg Hunt

A young man shows the Easter eggs he’s found in his blue bucket. The White House is in the background

Family Day

A family poses with the White House in the background

Easter Egg for the Win

A boy carries an egg on a colorful spoon as he moves down a cordoned aisle on the White House lawn

Never Enough Snoopy

Another family poses with Snoopy and Charlie Brown

Egg & Roll

A girl seated in a wheelchair uses an adaptive stick to roll her egg

The Early AM Crowd

A group of Little Lobbyists families poses on a street corner before the event—the Washington Monument is in the background

On Our Way

A group of families poses on the accessible pathways laid across the ground of the Ellipse as they enter the event

The Bidens and Friends

Flanked by two large Easter rabbits, President and Dr. Jill Biden wave from a balcony decorated with flowers and the White House seal

Fountains of Fun

A mom and her son, who uses a walker, pose in front of a fountain encircled by tulips. The White House is in the background.

Snoopy Rocks

A mom poses between Snoopy and Charlie Brown

Ready, Set, Roll!

A group of children, some with adaptive equipment, wait to roll eggs down their lanes on the White House lawn

Family Portrait

A family poses in front of the decorative picket fencing the White House used to separate events

Grab Them While You Can

A boy wearing a fedora and using an adaptive walker holds a mechanical arm grabber while his mom points to eggs he can pick up to put in his bucket

We Count, Too

A girl who uses a wheelchair marks her participation in the event while her dad points to the big chart

Arts & Crafts

Two girls work on making seed necklaces at a table under a tent

Egg Decorating

A young man and his mom work together to decorate an egg using the twirling decorating machine.

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.

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.

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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!