(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 29th 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).