Friday, February 24, 2017

Annual Developmental Disabilities Advocacy Day in Richmond with the Arc of Virginia

On January 31st, I joined the Arc of Northern Virginia on a trip to Richmond VA for a number of meetings with various state legislators about the importance of Medicaid Waivers and why they should "end the wait" for long waiting lists. I got to spend time with amazing people -- adults and children with developmental disabilities and parents like me.
The meetings went really well! I told the legislators about Caroline but the majority of them remembered me and her story from my testimony to the Virginia General Assembly Finance Committee members at the public hearing on the Governor's proposed budget in early January. The folks we met with seemed super supportive of our community.
We ended with a big rally in front of the Virginia State Capitol where some of us, the lieutenant Governor, and a number of legislators gave speeches. I gave a speech too. 

Virginia State Capitol

Picture provided by the Arc of Northern Virginia

Picture provided by the Arc of Northern Virginia

Caroline's story was featured in the Richmond Times-Dispatch. Please click here for link. 

News Article:
Disability groups protest 11,000-person waiting list for services in Va.
By Sarah Kleiner Richmond Times-Dispatch
Jan 31, 2017
With her 14-year-old son Danté Herrera bundled up in his wheelchair next to her, Marlo Dean asked a couple of hundred people to put their fists in the air as they protested an 11,000-person waiting list for disability services. 
“What do we do?” Dean asked the crowd gathered outside the Virginia Capitol in the cold morning air on Tuesday. 
“We fight,” they said in reply. 
“We fight to have what?” Dean said to cheers. “A life like yours.” 
Dean was among a long line of parents, advocates and lawmakers who implored the crowd to keep fighting for services for people with disabilities. Herrera, who has Batten disease, a rare and fatal brain disease, has been on the waiting list since he was 3 years old, Dean said. 
The government “should be helping people that have problems, that have challenges, that have difficulties,” said Del. Timothy D. Hugo, R-Fairfax. “We’re all God’s children and government has an obligation and a necessity to step up and try to help everybody, to make sure everybody can live life to the best of their capabilities.” 
Virginia has for far too long relied on institutionalized care for people with disabilities, said Jamie Liban, executive director of the Arc of Virginia, an advocacy organization. 
Even after the federal government required the state to provide care in the least restrictive settings possible — at home, if possible, rather than in institutions — the waiting list for services has been growing. Advocates have urged the state to spend more money on disability waivers, or slots, which provide a variety of services to families in need, such as respite care or home modifications. 
Caroline Conner, 7, has been waiting for a waiver slot to get adaptations in her home, additional nursing, a case manager and extra therapy to keep her muscles from stiffening in certain positions, her mother Marta Conner told the crowd. Caroline has Rett Syndrome, a brain disorder that makes it impossible for her to walk, talk, sit without assistance or use her hands. 
Marta Conner said her daughter wears diapers and her food is pureed. She had 85 seizures last year. 
Caroline has a lower level waiver that pays for respiratory equipment, but a more intensive waiver would “improve the length and quality of Caroline’s life and also allow us to continue to care for her in our home,” Marta Conner said.
Sen. Barbara A. Favola, D-Arlington, said it’s “shameful” that the waiting list is so long, and she vowed to reduce it.
Democratic Lt. Gov. Ralph S. Northam, a pediatric neurologist in Norfolk, said 70 percent of the children he cares for have disabilities. He said they should have the same educational opportunities as other students in school, and they should be educated in the least restrictive environments possible.
Adults with disabilities should have the same opportunities for employment and access to affordable housing, he said, as he put in a plug for his run for governor. 
“I can tell you as the next governor of the commonwealth of Virginia, I’m going to stand up for all of you with disabilities,” Northam said. “I will be your friend, and I hope you will be my friend.”

My testimony at the public hearing for the Virginia General Assembly

(I'm late posting this!)

On January 7th, I spoke to the Virginia General Assembly Finance Committee members at the public hearing on the Governor's proposed Budget. I shared Caroline's story to help make the case for Medicaid Waivers which are vital to individuals and families like ours.

I had reached out to the Arc of Northern VA (an advocacy organization for people with disabilities) and they arranged for me to give my testimony on behalf of Caroline. I could tell that the delegation was moved by our story, and I really hope that the upcoming state budget includes sustainable funding to continue these services for all Virginia families who need them.

My speech 
Good morning. I am Marta Conner and I’m here speaking on behalf of my daughter, Caroline. She would love to be here speaking for herself, but sometimes large crowds like this overwhelm her and cause seizures. So today, I’ll share some thoughts on her behalf.
Hi, my name is Caroline! I am seven years old, and I have a neurological disorder called Rett Syndrome which keeps my body from doing what I tell it to. I cannot walk, talk, or use my hands. I still wear diapers, and can only eat pureed foods and drink out of baby bottles. Still, I am smart and I understand everything going on around me. I use my eyes and make sounds to communicate. I also use a cool computer that tracks my eyes and talks for me! I love books about Dinosaurs, and my favorite movies are Tangled and Beauty and the Beast.
I was born healthy and strong, and I hit most of my milestones during my first year. Then, around my first birthday, I stopped keeping up with my friends who were already walking and exploring the world around them. Soon, my mommy noticed I was dropping my toys and couldn’t say my words anymore
At 17 months, I was diagnosed with Rett Syndrome. The day of my diagnosis was so sad for my family, but my parents promised me that we would live a happy and full life no matter what. Rett Syndrome can make that hard. I take four different medications to control my seizures, but I still get them. Last year, I had 98 seizures over 12 months. I have tummy issues and I take medication so that I don’t vomit all the time. I also can’t sleep without medication because my body doesn’t know how to relax.
As you can imagine, caring for my personal and medical needs is a full-time job, but thanks the EDCD Medicaid waiver, I have nursing care to help my mommy and daddy for a few hours each day on weekdays (and sometimes on weekends). This allows them to work and take care of our family needs.
I’m currently on a long waiting list for a Developmental Disabilities waiver, which will help me get additional services that are important to my health and the quality of my life, like a case manager, more nursing, and the opportunity to adapt our house so I can get inside safely. It will also help provide therapies to keep my stiff body from permanently getting stuck in certain positions.
There are more than 11,000 people like me that are also on the waiting list and need your help. About 4,000 of us use EDCD Waivers and the cost to convert our EDCD Waivers to a Developmental Disability Waiver is pretty low and a great way to get ahead of the waiting list! Please support converting our EDCD Waivers to Disability Waivers. Also, I hope you’ll reject the Governor’s proposal to reduce waiting list funding by $10 million. Instead, keep that money in the Waiver system to provide 800 additional Family and Individual Support Waivers and 250 Community Living Waivers for individuals and families on the DD Waiver waiting list.
You have the power to improve or even save our lives. Please fund the waiting list for Developmental Disabilities Waivers! END THE WAIT, start a life! Thank you.

Caroline's Medicaid waiver story

Caroline's Medicaid waiver is on the Arc Of Northern VA's website. Please click here to read it.

Caroline is one of 11,000 people currently on a long waiting list for a Developmental Disabilities waiver, which will help her get additional services that are important to her health and the quality of her life, like a case manager, more nursing, and the opportunity to adapt our house so she can get inside safely. It will also help provide therapies to keep her stiff body from permanently getting stuck in certain positions.