ARC of Northern Virginia Archives

The Arc of Northern Virginia with Lucy Beadnell

(March 20, 2019) Catherine Read interviews Lucy Beadnell, Director of Advocacy for the Arc of Northern Virginia. The Arc promotes and protects the human rights of people with intellectual and developmental disabilities, and actively supports their full inclusion and participation in the community throughout their lifetimes.

As the Director of Advocacy, Beadnell advocates for laws and policies that help protect and promote her clients’ safety and wellbeing, as well as give them the tools that they need to thrive. This year she has been particularly concerned about reports throughout the nation that those with disabilities have been targets of sexual abuse. She aims to use these horrific stories to educate the public about how to be proactive in order to avoid having their loved ones become a victim.

The Arc has worked with social workers and counselors to produce a variety of trainings, webinars and toolkits designed to help parents and caregivers give their loved ones the tools that they need to become “tough targets”. Beadnell explains that although this may be a tough topic for parents and caregivers to discuss, that having a developmentally appropriate conversation about appropriate and inappropriate behavior is necessary to keep their loved ones safe. These resource tools give them the appropriate language and sets the framework for conversations.

They recommend taking everyday opportunities to raise awareness for things like understanding the proper names for various body parts, understanding why it is inappropriate to keep a secret if someone asks them to do so, who is a safe person to talk to, and why sex is an expression of love. It is important for caregivers and parents to understand and accept that as their loved ones age, that they will indeed have a desire for a sexual relationship. This should prompt them to educate and talk to their loved ones so that they can advocate for themselves, and not be taken advantage of.

Additionally, the Arc has been working with the Council Of Governments on some technology tools to help people who are on the Autism spectrum, or are nonverbal, communicate with those around them in order to stay safe. There is an app called SafetyMate for smartphones and tablets that allow them to share what is happening if they cannot find the words.

Unfortunately, some people with disabilities can present in a way that looks different from what is actually happening. For people who repeat phrases with only a limited amount of words, or have trouble following commands quickly, it can be confusing to the police. This app allows people with disabilities to explain to the police what their situation is, and diffuse a situation so that everyone is on the same page.

Building on this concept, a new app called TravelMate is being used in Northern Virginia to help people with disabilities navigate public transportation. With a new grant from the Council Of Governments they are looking to roll it out to everyone within the area that uses the Metro system for public transit. Beadnell is excited to work collaboratively with her partners in the region to roll out this new initiative.

As Director of Advocacy, Beadnell works with legislators in the General Assembly to pass laws and advance policies that will help her clients. This year, they were able to score a big victory for patients with autism. Up until now, insurance companies were allowed to cap coverage of Applied Behavioral Therapy (ABA) to patients at the age of 10. This therapy has proven to significantly help patients with autism at all ages. This year, the Assembly passed a bill to require coverage of this treatment with no age limitation. This will help patients with autism reach their full potential and help reinforce the skills that they need to thrive at home and in the community.

Also on the legislative agenda is the request to fully fund the Priority 1 urgent waiver waiting list by FY 2020. They were able to secure funding this year for half of the list, and are hoping to take care of the remainder next year. Individuals who are on this priority list are assessed as needing services immediately by the Commonwealth’s own definition. The current system of funding has driven many of these people into crisis, a method that only winds up costing the commonwealth more money in both the short and long term. By addressing this priority list, they can begin to focus on people lower down on the waiting list, whose needs are less complex and less costly. Ultimately it will help make the system more efficient and will bring down costs.

There were a few disappointments this year. A bill that was submitted to ensure that students with disabilities are entitled the developmentally appropriate Family and Life Education died in committee. In light of stories of abuse, Beadnell firmly believes that this bill is critical to helping to keep students safe. Additionally, a request was put in for an increase in what Medicare pays nurses for caring for patients with disabilities. Often times these patients have complex medical needs, and due to the low rate of reimbursement, many families cannot afford to keep their loved ones at home with them, forcing the families to put them in nursing homes. Sadly, Virginia is one of the most underfunded states for people with disabilities. The Arc will continue to push for these measures.

Lastly, one of the other key initiatives that the Arc has been working on with Del. Kaye Kory is a bill that allows for Supported Decision Making. This model would be an alternative to the Guardianship model that currently exists. It would allow for a person with intellectual disabilities be surrounded by a team of people who are designed to help advise them and guide them in the decision making process. The fact is that the current Guardianship model does not give all of the protections that it was originally designed to do. This model also offers individuals a sense of agency in the decision making process, and the opportunity to work on thinking through problems and come to solutions.

The Arc will be holding its first Benefit Breakfast on Friday March 29^th from 7:30-9:00am at the McLean Hilton in Tysons Corner, to help raise money to support all of the good work that they are doing. To attend the breakfast, or simply support the organization with a donation, please visit their website. You can also follow them on Facebook and Twitter (@TheArcOfNova).

by Rachel Simon

Rachna Sizemore Heizer – Ability Focused Inclusion

(Aug. 20, 2018) Catherine Read sits down with inclusion advocate Rachna Sizemore Heizer, about her experience and desire to change the conversation around disabilities to focus on “ability-based inclusion”. Rachna is an attorney by trade, but after her son Jake’s autism diagnosis she became an advocate for inclusion in the education system. She did this not only for her son, but also for the thousands of other students who share their struggle. As Jake has grown up, and Rachna has gotten more involved in this movement, she now strives to broaden her message and make disability a part of the conversation about diversity in the United States.

Rachna’s main observation when she began this journey with Jake is that there was quite a bit of talk about inclusion, but not much action. She had to fight on a daily basis to have her son looked at as someone with potential. Her main criticism is that the educators he worked with, although well intentioned, worked to make him fit into a mold that he was never going to squeeze into. His limited verbal skills caused his abilities to be overlooked. Jake is incredibly talented in the musical arena, so much so that he could pick up a guitar and play any song by ear. He also has a sharp memory and can catalogue information easily in his mind.

A more productive approach would be to allow teachers to have the flexibility to nurture these talents, interests and skills in order to help children grow and learn in their own ways. Rachna’s ultimate goal is to have educators focus on creating productive citizens in our society, as opposed to having children with special needs trying to fit in the box that we have created for neurotypical students. Today, one in six Americans are disabled. By looking for opportunities to engage everyone, and play to their strengths, society as a whole will benefit.

After years of working in the advocacy arena training employers,consulting with educators, and speaking at conferences, Rachna feels that the blind spot in our society is that we do not view individuals with disabilities as a part of the whole. Collectively, we still view a disability as a physical limitation, while completely ignoring those with intellectual, social and emotional challenges. Instead of tying to better understand these conditions, society simply labels the behaviors as “weird” or “odd”. Heizer points out that is one of the main reasons why there is such a high unemployment, and underemployment rate amongst those with disabilities. She strongly believes that if we are able to break down barriers and increase understanding of one another, then we can open up more opportunities where everyone can thrive.

As for underemployment, Rachna has much to say. She points to the example of the job of grocery bagging, which is a common job appropriated to disabled individuals. She points out that there is nothing wrong with having people bag groceries, but often times this is the only opportunity afforded to them. Employers need to understand that many of these individuals are capable of doing much more complex work, and can be real assets to an organization if given the opportunity.

Throughout the interview, Rachna provides poignant examples of instances where she has encountered challenges and obstacles. As Jake matures, she has her eyes on the future and speaks passionately about the work opportunities that may or may not be available to him. She explains that employers focus a great deal on an individual’s personality and social skills when hiring, as opposed to focusing on weather or not the person can actually perform the necessary tasks of the job at hand. Some employers still have employees fill out personality tests, which greatly discriminate against people who struggle with interpersonal skills. They may, however, be the best person for the actual job that needs to get done.

Heizer is working hard to change the mindset of employers through training and advocacy. She encourages employers to understand how their organizations can benefit from diversifying their workforce, and how they can lead the way in making important changes that can take seed throughout our entire society. Her goal is to reach into the business community and open their minds to what a diverse workforce means. Her trainings include encouraging employers to find ways to be more inclusive, to value workers for what they can bring to the table and to adapt the workforce culture to be more welcoming and understanding.

Rachna closes by speaking about Stephen Hawking. She wonders if Hawking would have achieved all that he did if he was born with a disability? Would people have listened to and valued his genius if he always needed so much assistance, or would he have been relegated to lesser things? Rachna strongly believes we need to value each person for what they CAN do, and is working hard every day to make this a reality. She serves on the boards of the Fairfax-Falls Church Community Services Board and the Fairfax County Special Education PTA, as well as belonging to the ARC of Northern Virginia, the Autism Society of Northern Virginia, and being an appointed member to the FCPS School Board’s Advisory Committee for Students with Disabilities. She has also founded the organization Abilities not Disabilities. Rachna can be found on Twitter @RachnaHeizer.

by Catherine Read

ARC of Northern Virginia with Lucy Beadnell – Your Need to Know

(May 2017) Catherine Read talks with Lucy Beadnell, Director of Advocacy for The ARC of Northern Virginia, about the programs and services they provide to people in our community with Intellectual and Developmental Disabilities. The ARC is celebrating 55 years of supporting the IDD community in our region and continues to add programs, services and staff to their robust suite of resources.

Lucy talks about the ARC’s public speaking program “A Life Like Yours Toastmaster’s” which is an adapted Toastmaster’s model pioneered by People First. The drop-in group includes both people in the IDD community and their allies. In a recent Fairfax County Budget Hearing, Elizabeth Carter and Frank Stephens spoke to the Fairfax County Board of Supervisors on behalf of preserving resources for human services agencies like the ARC. These two young people wow’d the crowd with their great public speaking skills and their ability to so clearly advocate on behalf of themselves, their community and the organizations that support them.

Some of the exciting new initiatives involve app based technology. The Arc of Northern Virginia has partnered with SpecialNeedsWare, Inc to develop a travel training curriculum called TravelMate, which helps people to more confidently use public transit. Kymberly Deloatche, Travel Training Coordinator for the ARC, works with teachers, job coaches, therapists, assistive technology specialists, disability providers and family members on how to use this new technology. Newly added to their suite of tech tools is EmployMate which uses a similar model to help people navigate their employment tasks by acting as a guide, memory tool and resource.

In the ARC’s Special Needs Trust Department, Lucy talks about the work of Megan Rusciano, Beneficiary Advocate and the many services she provides to families from case management to life planning and many thing in between. It’s a needed support for families looking toward the long term well being of their family members.

It’s no surprise that The Northern Virginia Chamber of Commerce selected Lucy Beadnell as a nominee for the 2017 Outstanding Corporate Citizenship Awards in the Emerging Leader Category. The Corporate Citizenship Awards honor individuals, businesses and non-profits for above-and-beyond business leadership and corporate social responsibility. Lucy’s work, and that of the entire ARC of Northern Virginia staff and their Board of Directors, continues to be a model for effective direct services and advocacy. Under the leadership of their Executive Director, Rikki Epstein, they are relentless champions for integrating those in the IDD community into every local community where they live in Northern Virginia.

Keep up with the ARC on both Facebook and Twitter @TheArcofNoVa