The ARC

The Beginning of a New Era: Let’s Remove Barriers to Home and Community-Based Services

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of putting community first, our nation has had it backwards – and this week marks the beginning of the end of this outdated approach.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.

Courtesy of The ARC.

Uncategorized

COVID-19 Bill Victory for People With IDD – Thank You for Your Advocacy!

Anna, YOU did it!

After a year of your advocacy—calls, emails, texts—we now have the dedicated Medicaid home and community-based funding necessary to support people with disabilities, their families, and service providers in this crisis.

On Wednesday, Congress passed the American Rescue Plan legislation, which includes $12.7 billion of vital dedicated funding for one year to strengthen and expand access to Medicaid home and community-based services (HCBS). HCBS help people with disabilities live as independently as possible in their communities and out of the danger of institutions and nursing homes (read The Arc’s statement here). This funding is what we have been emailing you about for almost a YEAR, and we got it!

This is an incredible victory, thanks to you!

The Arc network has worked tirelessly together to fight for the critical needs of people with disabilities, their families, and the direct support professional (DSP) workforce to be included in COVID-19 relief legislation. Advocates from The Arc have contacted Congress nearly 170,000 times, shared their stories with the media, organized days of actions with partner organizations, and much more – and we made it happen!

In addition to the HCBS funding, other critical provisions in the bill include:
• Including all people with disabilities, including “adult dependents” in receiving stimulus payments
• Extension and expansion of tax credits to cover COVID leave, so that families can support loved ones while care is interrupted.

This has been a difficult year. People with disabilities have been disproportionally impacted by this pandemic. We have lost loved ones, friends, and direct support professionals. We did not give up. Your relentless work to advocate for what we needed to survive this public health crisis made a difference.

Take a moment to celebrate this victory. There will be a lot more work to do to secure long-term funding to make access to the community a reality for all, and I know you will be ready to fight for the human rights of people with disabilities with The Arc.

Peter Berns
Chief Executive Officer
The Arc of the United States

Uncategorized

What is the Status of Funding (in Virginia)?

In December 2020 Governor Northam released his Budget for the state for fiscal year 2021 (begins July 2021).  Last week, each body of the General Assembly released their plans for Virginia’s 2021 Budget.  

The Arc of Virginia included 2 items in our Funding Priorities this year:
Fully Fund Priority 1: 
There are over 3,000 people on the Priority 1 waiting list.The result at this point is:·        
Senate proposal includes 650 new DD Waiver Slots
House proposal does not include new DD Waiver Slots

Eliminate the Inclusion Penalty: Currently, the rate paid for the service Supported Living is significantly than the similar service of Group Home.  Both services suport someone up to 24 hours per day, the only difference is the setting.  This rate sets up an inequity in a system that is supposed to be focused on building a robust communmity based system.  We strongly believe that…Service Rates Should NOT Dictate Choice!!
The result at this point is:
Senate proposal does not include the funding but it does include specific language directing a review of Suported Living during future rate setting processes
House proposal does not include Supported Living funding or language

Strategy from here:  We are in discussions with key leaders regarding the waiting list and Supported Living.  We will bring you updates as we have them.  Please watch for ACTION ALERTS related to funding issues as we work to try and move the needle forward for both of these priorities. 

There are MANY other items in the budgets that are relevant to the DD community.  Some of those items are listed below.   
Please note some items are repeated if they are in both the proposed Senate and House Budgets.  Often the proposals of each body take different approaches.  The next step is for each chamber (House and Senate) to assing Budget Conferees to negotiate a final budget. The Arc of VA will be working with Conferees to share our positions on each item and we will be calling on grassroots advocates to contact the Legislators on key budget items.  So please watch for ACTION ALERTS.  

Rate Increase for Personal Care Services
FY22 – $36.7 million 
Item 313 #11h (HOUSE)

Increase Personal Care Rates (6.4% on May 1, 2021, 14.3% on November 1, 2021)
FY21 – $6.3 million 
FY22 – $60.82 million 
Item 313 #1s (SENATE)

HB 2137 Paid Sick Leave for Personal Care Attendants
FY22 – $3.44 million
Item 313 #13h (HOUSE)

Restore Funding for Medicaid Works for Individuals with Disabilities
FY22 – $57,210 
Item 313 #4h (HOUSE)
Item 313 #7s (SENATE)
Support Payments for Medicaid Developmental Disability Waiver Providers
FY21 – $15.0 million
Item 314 #1s (SENATE)

Permanent Continuation of DD Waiver Telehealth/Virtual Services (language) This item paired well with The Arc’s legislative priority for a workgroup to address barriers to Virtual Supports, including Assistive Technology.                    Item 313 #18h (HOUSE)
Item 313 #14s (SENATE)

Rebasing Report on Developmental Disability Waiver Rates – provides a reformulation of waiver rates.  
FY22 – $175,000
Item 320 #1s (SENATE)

DD Waiver provider rates to reflect the impact of minimum wage increases – CONTINGENT amendment that only becomes effective IF general fund revenues for fiscal year 2021 exceed the FY21 official forecast. If this happens, the amendment includes three priority items listed in priority order – the DD rate adjustment is #2.                                                                                                                                          FY 22 – $20 M (SENATE) 
 What is Next and What can YOU DO?
We will continue working with key legislators to move forward the Funding priorities.  We will need advocates engaged and taking action by contacting Legislators to tell them that these items are important to the DD Community.  
1) Follow our Action Center (button below)
2) Watch email for important ACTION ALERTS on Funding Items!!   follow our Action Center
The ARC

2021 GA Session Update

2021 General Assembly UpdateFebruary 18, 2021

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 two Mobilizing Events ~ 10/29/20 & 12/10/20 
Provided Resources and Guidance ~ DD Advocacy Toolkit & 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  

The ARC

Your Advocacy Needed on COVID-19 Bill!

Dear Anna,  

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. 

But we need your help to keep this provision in the bill, as many competing priorities are vying for funds. Contact your Members of Congress now and urge them to include additional Medicaid funding to states for HCBS in the next round of COVID-19 legislation. 

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

Act Now!