Help us ensure disability funding is available to all who need it!
There is so much at stake! Negotiations are happening right now and the House of Representatives may vote in days. Right now, Congress is deciding whether to support critical programs for people with disabilities, their families, and the direct support professional workforce in the Better Care Better Jobs Act, including:
Funding for home and community-based services (HCBS), which provide critical support so people with disabilities can live in their communities instead of in institutions.
Paid leave for all workers so no one should have to decide between their paycheck and caring for themselves or a loved one.
Improvements to the Supplemental Security Income (SSI) program. SSI benefits, asset limits, and other program rules must be updated to lift people with disabilities out of poverty.
Stay in the Know, with information from The Arc of Virgina Now.
TOP STORY
VOTER EDUCATION
The Arc of Virginia, local chapters of The Arc and other partners are hosting multiple opportunities for you to learn about disability issues and the candidates who are running for office.
Statewide Candidate Forum: Govenor, Lieutenant Governor, and Attorney General
If you have not viewed the Statewide Candidate Forum that took place as part of the annual convention, you can view it to hear from the Statewide Candidates as they answer questions from the Disability Community.
Voter Education Event: Choosing the Right Candidate for YOU!
September 30th 5:30 -6:45pm
Our Voices, together with The Arc of VA and Matthew Shapiro of 6 Wheels Consulting, provides leadership and tools for Virginia’s disability community (people with disabilities, families and community at large) to:
Understand: how the results of Virginia’s November elections will impact our lives
Educate: ourselves about the people who want to represent us (and educate these people about what we want and need)
Participate: taking control and being heard by casting our votes!
The Developmental Disability (DD) System was in crisis long before the pandemic, and COVID has shown the weaknesses of a system that has been underfunded for far too long. Virginia, for decades, opted to focus its resources on institutional systems of care that did not allow people to live their lives in communities with friends, family, and neighbors. As a result, because of the high cost of institutionalization, there wasn’t enough money left to invest and build a strong community-based system. Leaving our system with reimbursement rates for community services too low to attract and retain qualified staff.
COVID has created a National workforce crisis, and has exacerbated the crisis of a shortageof Direct Support Professionals. In Virginia, residential programs are discharging residents due to lack of staffing, shuffling residents to larger settings that may or may not be in their community, day and community engagement programs are closing, and it is nearly impossible for people to find personal care and in home support staff.
We must make sure that the State sees this as not only a priority, but as a matter of urgency that they must address. To do that, we need to collect data … real life stories of the impact that this crisis is having Share Your Story
Workgroup Updates and Information
There are several active workgroups currently focused on solving problems and eliminating barriers within the DD System. These groups were initiated by legislation from the General Assembly in order to compel the State (various state agencies) to address problems by developing solutions WITH the appropriate stakeholder community.
DD Waiver Workgroup
Purpose: This group initiated in 2021 and was charged with developing a plan to reduce the waiting list and make recommendations for increasing reimbursement rates.
State Agency: DBHDS lead with DMAS representation
Representation of People with DD/Families: Eight representatives from The Arc of Virginia’s membership were appointed to the group.
Status/Progress: Group has met many times to develop recommendations, those are in draft form awaiting approval from DBHDS & DMAS. Recommendations likely to include:
Funding of rate increases and slots
Funding for investments in innovation for inclusive services
Development of a set of core services available to people on the waitlist
Assistive Technology and Virtual Support
Purpose: Charged with developing recommendations to increase access to assistive technology and virtual supports.
State Agency: DMAS
Representation of People with DD/Families: 5 members with IDD or familiy members were appointed from The Arc network.
Status/Progress: This report is also complete and awaiting approval from DMAS. Several recommendations have been made to remove barriers and make the process for applying and receiving AT easier.
Criminal Justice – HB 659
Purpose: Initiated in General Assembly session 2020, this group is developing recommendations for ensuring accommodations for people with IDD in the prison system.
State Agency: Department of Corrections
Representation of People with DD/Families: Two representatives of The Arc of VA network.
Status/Progress: This group has been meeting for over a year evaluating a complex system and designing recommendations to ensure people with IDD are identified in prisons, parole and probation, accommodated and protected from harm. The final recommendations are being finalized with an anticipated completion date of November 1.
Criminal Justice – Marcus Alert
Purpose: The Marcus-David Peters Act aims to provide behavioral health responses to behavioral health emergencies and reduce negative outcomes involving use of force in law enforcement interactions when an individual is experiencing a behavior health crisis related to a mental health, substance use, or developmental disability.
State Agency: DBHDS
Representation of People with DD/Families: 3 self-advocates and 1 staff member from The Arc of VA represent the DD community on this group.
Status/Progress: This group met extensively to plan for the implementation of the Marcus Alert System. The initial 5 regions that will pilot the alert system will begin to do so by December 2021. Currenlty, the State is seeking proposals for funding for projects that support the alert systems implementation.
Special Education – Children’s Services Act (CSA)
Purpose: This group is a 2 year workgroup initiated in 2021 to
“direct the transfer of Children’s Services Act funds currently reserved for children requiring an educational placement in a private special education day school or residential facility to the Department of Education”
“provide recommendations on the use of Children’s Services Act funds to pay for services delivered directly to students with disabilities in public school to enable those who are at risk of out-of-school placements to remain in a public school setting
“provide recommendations on the most effective use of Children’s Services Act funds to transition students from out-of-school placements to public school.The Work Group shall specifically evaluate whether or not Children’s Services Act funding should be expanded to include ongoing support for students with disabilities following the 12-month transition period.
State Agency: Department of Education & Office of Children’s Services
Representation of People with DD/Families: The Arc was only able to get one person appointed, however, we are utlizing our Inclusive Education internal team of advocate volunteers to follow and monitor this work in order to advise the appointee.
Status/Progress: This group has had two meetings and is facilitated by an outside consulting firm. There is a great deal of disagreement among workgroup members regarding this work.
FOR ALL WORKGROUPS
If you have input regarding the work of any of these groups, feel free to reach out to us to learn more and share your perspective. We will provide future updates.
Preparing for 2022 General Assembly Advocacy
2022 Legislative Agenda
In order to develop an annual Legislative Agenda, we listen to a large group of stakeholders who all inform and guide our public policy work. This input is gathered year round from our members and partners and approved as a final agenda in late Fall.
Much of this year’s agenda will come from the recommendations of the workgroups discussed in the previous section and will include both legislative items and funding priorities. But — there is still time to share your input! We will host a Virtual Advocacy RALLY Tuesday November 16th at 6:30PM. Join us to learn how to be a part of the DD Movement!
Virginia’s system continues to have an institutional bias with policies and funding that prioritize and often incentivize facility and segregated services over fully integrated services in the community. This bias robs people of the option to live a life like yours regardless of level of support they need.
In order to change this, we are asking officials to sign a Pledge to Equity, promising to prioritize funding for inclusive services at levels at least equivalent to congregate settings. Watch for updates on this project as we roll the pledge out to Candidates and newly elected members.
DATES TO REMEMBER
BUDGET HEARINGS – January
It all starts with a Budget. Learn about how the State Budget is created by clicking the link below. Note: The Date in Video is for last year, we will announce 2022 Date as soon as available … but hold the first week of January open!
GA SESSION – Session begins March 2022!
Federal Advocacy – An Opportunity We Can’t Waste!
#Care Can’t Wait CAMPAIGN
– ALL HANDS ON DECK for this ONCE IN A LIFETIME OPPORTUNITY
Background
President Biden promised $400 billion in funding for HCBS. But the House recently came back with a proposal of only $190 billion – less than half of what we have advocated for and less than half of what we have been promised. This is unacceptable, and not enough funding to create the transformative change we need.
We need Congress to fund a transformative change in our home and community based services system. With this investment, we can ensure that disabled and aging people can get the care they need without being pushed into institutions, and to ensure that direct support workers’ are paid fairly and treated with dignity.
ACTION STEP
The Actions are simple, we need you to ACT NOW. There are 4 ways to Act, you can do 1 or do all 4! In order of priority for you to ACT:
CALL Congress
Email Congress
Tweet Congress
Share Your Story
Use the Tool Below for all 4 Actions. The Stories are being collected and THOUSANDS of stories will be hand delilvered to Congress…make sure yours is in there. The tool asks you some questions and turns it into your story… EASY for you…BIG IMPACT!
Use the video below to post to your Social Media, tag your members of Congress.
Specific Virginia Tweets: Use these to tweet @MarkWarner and your Representative in Congress.
@_______, which part of the $400 billion for #Medicaid #HCBS is concerning? Right now 1 in 5 home care workers in VA live in poverty and 103,000 home care job openings will need to be filled by 2028. We need to #BuildBackBetter by providing these essential workers with a livable wage!
@_______, a $400 billion dollar investment in #HCBS will allow for 14,400 family caregivers in VA to return to work! In a time where the nation is experiencing a labor shortage, it is essential that we #BuildBackBetter by making these key investments!
@_______, 13,000 Virginians are on the waiting list for #HCBS services and it will only grow in the coming years if left underfunded! A 400 billion dollar investment will allow for VA to #BuildBackBetter by investing essential services!
Funding for People on the DD Waiver Waitlist – Time Sensitive
The Individual and Family Support Program-Funding provides financial assistance to families and individuals who are on Virginia’s Developmental Disability(DD) waiver waitlist. If you are on the DD waitlist you may apply online only for funds to cover the cost of a variety of items that will help a person who is living in a community setting.
The IFSP-Funding Portal is open until October 4, 2021 to create a draft application. Applications must be submitted on October 7,2021. To learn more and how to apply go to https://ifsponline.dbhds.virginia.gov/
DD WAIVER APPLICATION FORMS REVISED
If you are on the Developmental Disability Waiver Waitlist, be aware that changes were made to the application forms that may affect your status on the waiting list. The Priority Level Needs Checklist has added requirements to meet Priority Level 1 status. The Critical Needs Summary assesses a person’s level of need, and it has additional requirements that may change a person’s score. If you or your family member is in need of a DD Waiver, we recommend that you obtain copies of your waiver application documents from your Community Services Board representative and review them to see if they accurately describe your need for a DD Waiver. If you think changes are needed contact your CSB representative. You may view the application forms on our website: If you have questions or need more information feel free to contact The Arc of Virginia for consultation by phone (804) 649-8481 x 104 or email info@TheArcofVA.org
VA – Dept. of Justice Settlement Agreement Extended
In 2012 Virginia entered a Settlement Agreement with the Department of Justice (DOJ) to correct violations of the Americans with Disabilities Act and a lack of a sufficient community based system of support and services.
Virginia agreed to come into compliance with the Settlement Agreement by June 2021. However, the Independent Reviewer for the Settlement Agreement found that Virginia is not in full compliance and the court has given Virginia an extension for completion to July 1, 2022.
Find more information about the Settlement Agreement:
Home should be in the community, with the services to thrive. After years of advocacy by The Arc and our advocates, Congress released draft legislation to make access to home and community-based services (HCBS) a reality for all. No more waiting lists or being tied to one state; this pivotal piece of legislation will be transformative. For decades, many people with intellectual and developmental disabilities (IDD) have been warehoused and lived segregated lives in institutions. Even today, these institutions still exist in 36 states and are using state and federal dollars. Meanwhile, people with disabilities and families want access to home and community-based services, or HCBS, and there’s not enough of these services to meet the desperate need across the country. Instead of putting community first, our nation has had it backwards – and this week marks the beginning of the end of this outdated approach. COVID-19 has put a glaring spotlight on the health dangers facing people living in nursing homes and institutions. Behind closed doors, we don’t even know how many people with disabilities and support staff have died or become ill from this virus. What we do know is that this collective experience has proven that a life in the community is not only what people want, but it is safer. On Tuesday, Members of Congress unveiled a critical bill developed with The Arc and other disability and aging advocates, that will fundamentally change how people with IDD and older adults live their lives. The Home and Community-Based Services Access Act (HAA) is a bill that will:
Eliminate waiting lists. Today, there are nearly 850,000 people on waiting lists across the country. And often, people are waiting years—sometimes decades—to access these services.
Increase federal Medicaid funding to states for HCBS and provide additional grant funding to help states to build the capacity that they need.
Address the decades-long direct support professional workforce crisis and ensure that the workers who support people with disabilities and older adults—who are disproportionately women of color—are paid a family sustaining wage.
Allow people with disabilities and their families to move from state to state and still be able to access crucial HCBS services, and create a set of services that all states must provide.
The Arc has been leading behind the scenes for years to make this bill a reality—and you have helped too! With every call to support HCBS funding and email to show why a life in the community is important, you have helped with the creation of this landmark legislation. All our efforts have led to this day. We have a lot of work ahead of us to get this federal legislation finalized, passed, and ultimately signed into law. Just days ago, we got a reprieve from Congress, a year-long significant boost in funding for our current HCBS system. That happened because of YOU. But after a year, we go back to the same broken system, unless we act now! We have an opportunity to transform the system for generations to come. To get it right. To put community first. It’s a new era, and The Arc is once again leading toward the future. Learn more about this critical issue and share your story. We need your momentum to carry us forward into a new era.
The 2021 Session began January 13th and it has been a BUSY 5 weeks! Keep reading to learn about what The Arc of Virginia team has been doing to advcocate for people with developmental disabilities and to see where things stand with key legislation and funding for people with disabilities.
Inside this Update:· The Arc of Virginia’s Legislative & Funding Priorities· Details of our advocacy mobilization efforts· Status of Legislation· Status of Funding · Next Steps
What are our Legislative & Funding Priorities?
Working with our advocates, members and partners, each year we develop priorities for legislation and funding that will improve the lives of people with disabilities. Advocates from across Virginia then mobilize and work to get those priorities passed by the General Assembly.
If you haven’t read this year’s Legislative & Funding Priorities,click below:
How Have We Mobilized Advocates? Preparing Advocates Hosted twoMobilizing Events ~ 10/29/20 & 12/10/20 Provided Resources and Guidance ~ DD AdvocacyToolkit& Budget Hearing Guide Created Video Content ~ Virginia’s Budget Hearings and How to participate Advocacy ~ Legislative Outreach and Education Budget Hearings ~ Supported advocates to write and present testimony 2021 Session Kick Off Rally ~ 150+ Attendees and a dozen Legislators attended for a full review of the Legislative & Funding Priorities DD Advocacy Constituent Meetings ~ Hosted 42 Constituent Advocacy Meetings with Legislators and 120+ of their constituents to talk about the needs of the DD Community.
What is the Status of Legislation?
In addition to working to pass specific legislation on our agenda, The Arc of Virginia team also follows, testifies and monitors other legislation that has an impact of the lives of people with developmental disabilities. Starting with our legislative priorities, below is the current status of key bills and budget items:
Children’s Services Act
There were multiple bills proposed this session resulting from two Reports released by Virginia’s Joint Legislative Audit and Review Commission (JLARC) in late 2020. The first report was a review of the Children’s Services Act (CSA) funding and how it impacts students with disabilities in the school system. The second report was an assessment of Special Education in Virginia.
CSA Funding for Special Education:
Currently CSA funds may only be used on the most restirctive end of the placement continuum (private day schools). The Arc of VA advocates for funding Equity and Choice. Equity can be achieved by allowing funds to support students in whatever setting is determined by their IEP team as that student’s Least Restrictive Environment (LRE). Because the recommendations of the JLARC report included plans for making CSA funding available to support students across the placement continuum, there were several proposed bills for related to CSA funding plans.
The Arc of Virginia’s Position on CSA Bills:
The Arc of VA supported bills that were equitable in funding and opposed those bills that created new inequities in our sytem. Specifically, SB 1313 & HB 2117 stated that CSA funds could be used to pay for services for a student to transition from private day school back to their local public school. However after a 12 month transition period, CSA funding could no longer be used for that student’s services in the public school. While the bill seems to assume that the local school division would pay for the needed services for that student following the transtion period — one can only also assume that if the local school division had funding for those services needed by that student, then the child would not have been referred to private day placement in the first place. There was a great deal of debate and discussion about CSA issues and The Arc of VA, along with other advocates, stood firm in the assertion that state funds expended on special education for students with more complex needs, must be equitably available regardless of what setting a student receives their education.
Noting that the cost of services after a 12 month transition period for a student from a private day school to a public school, would NOT cost the state any additional funds than if the student had remained in private day, The Arc could not support legislation that continued to reinforce systemic inquities for students with disabilities in Virginia. We did however, work with the patrons of those bills we opposed and had the issue of the continuation of funding for post-transition services added to the items to be addressed by a workgroup that will be formed as a result of the bills that are moving forward. To learn more about the position on CSA for The Arc, Disability Law Center, CA Human Services, and NAMI Virginia, read this Position FACT SHEET
SB 1313 – Passed Senate > Passed Sub-Committee in House· HB 2117 – Passed House > Passed Full Committee in Senate
Virtual Supports
Our world has changed and we must be sure that people with developmental disabilities have the tools to access virtual supports. The idea for this bill grew from the grassroots work of the A Life Like Yours Self-Advocacy Alliance, where multiple members have experienced barriers to technology and virtual supports first hand. The ALLY Alliance and The Arc of VA worked with Delegate Runion and Senator Suetterlein to put forth legislation for a workgroup charged with identifying and solving barriers to things like assistive technology and environmental modificaitons that help people to connect in the virtual world for services, supports and social connections. HB 2197 – Passed House > Passed Senate SB 1472 – Passed Senate > Passed House
Criminal Justice Reform
The Arc of Virginia partners with the family group Legal Reform for the Intellectually and Developmentally Disabled (LRIDD) to advance legislation for Criminal Justice Reform. This year working closely with Senator McClellan, we are advocating for SB 1315 and HB 2047.
These bills seek to allow a person’s disability to be considered during the criminal justice process. Recognizing a person’s Intellectual and Developmental Disability OR Mental Health Condition are both critically important during criminal justice proceedings. Too often, people with Intellectual and developmental disabilities & Mental Health Conditions — particularly black, indigenous, and other individuals of color — become trapped in the system due to guidelines that do not recognize how Intellectual and developmental disabilities or MH conditions can affect so many aspects of that person’s interaction with the justice system.
Within the General Assembly there seems to be broad agreement that IDD should be considered during criminal proceedings, however, the debate remains around how broad the bill may apply to mental health conditions. The Arc of VA supports the inclusion of both IDD and mental health. At this point, these bills are still being debated but have passed their respective chambers with some differences. The hope is to conform and match both bills to cover IDD and MH.
SB 1315 – Passed Senate covering both IDD and MH > Currently being debated in House HB 2047 – Passed House covering only IDD > Currently in holding pattern awaiting resolution of SB 1315.
Other Key Legislative Items:
As noted, during session we support, testify, follow and monitor dozens of bills. Here are a few of the bills we have been actively working to support:
HB 2162 (Delegate Tran) – Ensures people with disabilities can have access to their designated support person while in the hospital or medical facility. During COVID in particular because of visitation restrictions, people have been denied access to reasonable accommodations for having support persons with them. Passed House > Passed Senate Committee
SB 1306 (Senator Morrissey) – Eliminates mandatory minimums for assault on an officer. Currently any action towards an officer carries mandatory minimum sentencing, putting people with disabilites who may be experiencing disregulation or may not have full control of their body at times, at risk for receiving harsh treatment in the criminal justice system. Passed Senate with slim margin > Awaiting hearing in House
HB 2230 (Delegate Bell) – Directs the Department of Behavioral Health and Developmental Services (the Department) to develop and implement a program to educate individuals with intellectual and developmental disabilities, their families, and others regarding the availability of supported decision-making agreement. This legislation came out of a workgroup formed last year. The Arc of VA and The Arc of Northern Virginia were active members, with The Arc of NOVA being a strong leader in this work for many years working with Delegate Kory. Passed House > Awaiting hearing in Senate (anticipated ease in passing)
HB 2238 (Delegate Kory) – Requires private day schools for students with disabilities to be licensed in order to receive state funding. Passed House (large margin) > Awaiting hearing in Senate (anticipate passage)
HB 2140 (Delegate Guzman) – Championed by the Association of People Supporting Employment First (APSE), this bill creates an alternate application process for state of Virginia to encourage hiring of people with disabilities by the Commonwealth. Passed House > Awaiting hearing Senate (anticipate ease in passage)
HB 2277 (Delegate Bell) – Allows students with disabilities who were scheduled to graduate Spring of 2021, to remain extra year to make up for losses during COVID. Failed to pass House
In case you missed the email below: we still need your help to make sure that people with disabilities, their families, and the direct support professional workforce are included in the pandemic relief bill that is moving through Congress right now.
Advocates and staff from The Arc have been working hard, and we are glad to report that the bill being considered in the U.S. House of Representatives DOES include dedicated funding for Medicaid home and community-based services (HCBS). These funds are necessary to serve people with disabilities in their homes and communities and will also provide better wages and support for the direct support professional workforce. Access to HCBS will limit the risk of people with disabilities being put in institutions. State systems are already facing large cuts across the country, making these federal dollars more important than ever.
Thank you for your advocacy! Peter BernsChief Executive Officer The Arc of the United States
Tell Congress: People With Disabilities Can’t Be Left Behind!
We are almost ONE YEAR into a pandemic that has disproportionally impacted people with disabilities. Congress must include people with disabilities, their families, and the direct support professional workforce in COVID-19 pandemic relief legislation.
Your Members of Congress once again must hear from you so that our critical needs are included in the first COVID relief package of the new Congress.
Tell Congress #WeAreEssential and that these key provisions MUST be included in the next coronavirus relief bill:
Dedicated funding for Medicaid home and community-based services (HCBS) Personal protective equipment (PPE) for direct support professionals Paid leave for all caregivers Economic impact payments for all people with disabilities
