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Advocacy

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Message from the National Council for Mental Wellbeing:

This Fall is shaping up to be one of the most consequential federal legislative periods in recent years.

Lawmakers are treating the time between September and December as one of their last and best chances to pass meaningful, bipartisan legislation and secure funding for key behavioral health programs and services before the 2024 election cycle dominates the conversation.

So, it’s the perfect time for us to come together and demand our elected officials prioritize solutions to address the nation’s ongoing mental health and substance use crises.

Register Now!

Register now to join our Virtual Public Policy Institute on Wednesday, October 18. Together, we’ll embark on an afternoon of virtual advocacy where we’ll directly contact elected officials about issues like:

  • The behavioral health workforce shortage;
  • Establishing CCBHCs in federal law;
  • Expanding access to substance use care and treatment; and
  • Investing more in the nation’s crisis care infrastructure.

While great progress has been made by Congress and the Biden-Harris administration in the past few years, more must be done to ensure everyone everywhere has access to comprehensive, high-quality mental health and substance use care.

This is your time to make a difference. With your help, our unified voice will cut through the noise and ensure mental health and substance use programs are front and center during a busy legislative Fall.

We look forward to seeing you.

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At the August 2023 ISAC meeting, Self Advocates United as 1 (SAU1) presented a tribute to Carolyn Morgan, who was an inspiring self-advocate who encouraged many others to speak for themselves. SAU1 has developed a Youth Empowerment Fellowship program in memory of Carolyn, and is seeking support for this program, including financial. Their presentation is now available and can be viewed here. If you would like to support or ask questions about the program, please contact SAU1 directly.

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Message from the National Council for Mental Wellbeing:

Last week we reached out asking you to write to your congressional representatives in support of the 988 Implementation Act. We wanted to pop back into your inbox with a critical opportunity we have to expand the network connecting people to mental health and substance use care across the country.

The 988 Suicide and Crisis Lifeline has successfully served millions of people. But there is more work to do, and we need your support to do it. Support from you and your representative will go a long way that our crisis care system provides people in every community with someone to respond and somewhere to go if we hope to fulfill the promise of 988.

As a reminder it will only take 2 minutes to show your support. Here is why it’s paramount that your representatives support this legislation, 988 Implementation Act:

  1. Expands behavioral health workforce training programs and provides grant opportunities for local behavioral health centers;
  2. Expands Medicaid coverage for behavioral health services, including short term crisis intervention services;
  3. Increases support for mobile crisis response, ensuring that even those in rural areas have access to timely care;
  4. Creates new capital grants to be used for crisis response program facility renovation, construction, and expansion;
  5. Narrows the IMD exclusion so that services furnished in psychiatric acute care crisis beds administered by CCBHCs and other crisis care settings are eligible for Medicaid coverage; and
  6. Increases awareness of 988 through a national media campaign.

Contact your Congressional Representatives and urge them to support the 988 Implementation Act. By strengthening, and raising awareness for current resources, and building capacity at the state level for these on the ground crisis services, this legislation will make a difference, and save the lives of your friends, neighbors, and community members in crisis. Time is of the essence. Act today, and together we can strengthen the crisis care continuum.

Thank you for your advocacy.

Sincerely,
Rachel Abraham
Federal Policy and Advocacy Coordinator
The National Council for Mental Wellbeing

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Capitol hill building in the morning with colorful cloud , Washington DC.

Message from the National Council for Mental Wellbeing:

This month the National Council for Mental Wellbeing and hundreds of other organizations across the country celebrated the first anniversary of the 988 Suicide and Crisis Lifeline, a new dialing code operated through the existing National Suicide Prevention Lifeline. With the new, easy to remember number, the Lifeline successfully served millions more people than in years prior.

Yet we still have a long way to go to ensure that our crisis care system provides people in every community with someone to respond and somewhere to go.

Recently, Representative Tony Cardenas (D-CA-29) introduced the 988 Implementation Act, bipartisan legislation that seeks to provide federal funding and support for states to enact 988 crisis services and broaden awareness of resources for those in crisis.

What is the 988 Implementation Act? 

  1. Expands behavioral health workforce training programs and provides grant opportunities for local behavioral health centers;
  2. Expands Medicaid coverage for behavioral health services, including short term crisis intervention services;
  3. Increases support for mobile crisis response, ensuring that even those in rural areas have access to timely care;
  4. Creates new capital grants to be used for crisis response program facility renovation, construction, and expansion;
  5. Narrows the IMD exclusion so that services furnished in psychiatric acute care crisis beds administered by CCBHCs and other crisis care settings are eligible for Medicaid coverage; and
  6. Increases awareness of 988 through a national media campaign.

Contact your Congressional Representatives and urge them to support the 988 Implementation Act. By strengthening, and raising awareness for current resources, and building capacity at the state level for on the ground crisis services, this legislation will make a difference, and save lives.

Time is of the essence. Act today, and together we can strengthen the crisis care continuum.

Sincerely,
Rachel Abraham
Federal Policy and Advocacy Coordinator
The National Council for Mental Wellbeing

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Individuals with intellectual disabilities and autism (ID/A), their families, and ID/A service providers held a rally on June 28 at the state Capitol to urge lawmakers to increase funding for services and support in the 2023/24 budget. Providers told those assembled in the Capitol rotunda that nearly 60,000 Pennsylvanians are at risk because there are not enough direct support professionals (DSPs) to care for them. Advocates pressed lawmakers to restore the $170 million in funding to invest into fee schedule rates to support DSPs and services.

“Across the state, we are seeing that there is insufficient staff to meet needs or no staff at all,” said Richard S. Edley, PhD, Rehabilitation & Community Providers Association president and CEO. “DSPs are overworked and depleted and have compromised their own health to serve individuals with ID/A. Program closures have eliminated essential services and also affected the health of individuals served. Underfunding a system where individuals and families are already waiting for or losing needed services simply compounds a dire situation. We need to come together to help those in need.”

View news clips and photos of those who advocated at this event for ID/A services funding below.

WENY (Lilly Broadcasting)
VIDEO: “The Collapse Is Here” Intellectual Disability and Autism Care Providers Issue Dire Warning to Pa. Lawmakers

Penn Watch (Featuring RCPA President/CEO Richard S. Edley, PhD)
“The Collapse is Here”

 

IDA Rally 06-28-23 Amy Lutz, Author and Parent, PAAL with Richard Edley, RCPA
IDA Rally 06-28-23 Crowd at Rally 1
IDA Rally 06-28-23 Crowd at Rally 2
IDA Rally 06-28-23 Carol Ferenz, RCPA with Rep Stephen Kinsey and Gloria Satriale, PAAL
IDA Rally 06-28-23 Sherri Landis, ARC of PA
IDA Rally 06-28-23 Karen Beaston Janeen Latin from UCP and Lynda Bowen
IDA Rally 06 28 23 Emmett IDA Child With Mother Elizabeth Tolis
IDA Rally 06-28-23 Signs from Rally Closeup
Sample Sign from IDA Rally 06-28-23
IDA Rally 06-28-23 Rep Patty Kim with Carol Ferenz, RCPA
IDA Rally 06-28-23 Rep Kinsey Signs Letter Supporting IDA Funds
IDA Rally 06-28-23 Amy Lutz, PAAL, Speaking to Supporters
IDA Rally 06-28-23 Karen Beasley, Parent of Child w/IDA, Addresses Those in Attendance
IDA Rally 06-28-23 Carol Ferenz, RCPA with Rep Stephen Kinsey
IDA Rally 06-28-23 Elizabeth Tolis and Child Emmett with IDA
IDA Rally 06-28-23 Signs from Rally
IDA Rally 06-08-23 Woman Addresses Crowd of Supporters
IDA Rally 06-08-23 All Speakers Were Well Received

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The ID/A Associations are continuing our advocacy for increases to the IDD budget in PA. Join us at the Capitol in Harrisburg on Wednesday, June 28 to advocate for the preservation of desperately needed services for individuals with Intellectual Disability and Autism. People with disabilities, families, and advocates will be going to legislative offices in Harrisburg, dropping off information, and asking legislators to increase funding for ID/A services.

We will begin by meeting at the East Wing entrance to the capitol at 11:00 am. From there, we will be distributing handouts for participants to deliver to various offices. Staff from all the associations will be on hand to provide guidance as needed. After visits and a break for lunch, we will gather at 1:00 pm in the rotunda for a press conference, hearing from families who are in need of supports and services for their family member(s).

This effort is imperative, as there is no longer a risk of the system collapsing. The intellectual disability system is collapsing. Thousands of people are losing services, and more will soon be added to that list due to a proposed budget reduction and a lack of investment into rates. Inaction by the legislature will only further exacerbate this crisis and leave thousands more individuals and families without services. If nothing is done to address the inadequate rates now, more families in Pennsylvania will suffer.

The budget negotiations are ongoing, and we need YOU and everyone you know to help our advocacy efforts. As the Governor and legislature continue to negotiate funding for the budget, they need to hear from constituents about the importance of the ID/A system and why investing into the rates is the only way to ensure that providers can pay their staff higher wages and attract new staff to serve more people.

If you would prefer to visit your local legislative offices, we can provide the handouts to you via email to distribute to your legislators.

Contact Carol Ferenz or Cathy Barrick to register or if you have any questions.

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The ID/A Associations are continuing our advocacy for increases to the IDD budget in PA. Join us at the Capitol in Harrisburg on Wednesday, June 28 at 10:00 am to advocate for the preservation of desperately needed services for individuals with Intellectual Disability and Autism. People with disabilities, families, and advocates will be going to legislative offices in Harrisburg, dropping off information, and asking legislators to increase funding for ID/A services.

There is no longer a risk of the system collapsing. The intellectual disability system is collapsing. Thousands of people are losing services, and more will soon be added to that list due to a proposed budget reduction and a lack of investment into rates. Inaction by the legislature will only further exacerbate this crisis and leave thousands more individuals and families without services. If nothing is done to address the inadequate rates now, more families in Pennsylvania will suffer.

By joining us at the Capitol, you will play a crucial role in amplifying voices and urging lawmakers to prioritize the preservation and strengthening of these essential services. Please consider making this trip and contact Carol Ferenz or Cathy Barrick to register for the event. We are tracking the attendance and will be sure that you receive further information regarding our efforts on this date. Additionally, please share this message with all of your contacts and ask them to take action!

The budget negotiations are ongoing, and we need YOU and everyone you know to help our advocacy efforts. As the Governor and legislature continue to negotiate funding for the budget, they need to hear from constituents about the importance of the ID/A system and why investing into the rates is the only way to ensure that providers can pay their staff higher wages and attract new staff to serve more people.

We are asking for you to call the Governor’s office at 717-787-2500 and say the following:

“Hello, my name is ________  . I am asking that Governor Shapiro support investing additional money into the Intellectual Disabilities and Autism rates. These funds must be invested into the rates so that Direct Support Professionals can receive a needed pay raise. People across the state continue to go without services, and without an increase to the rates, people will continue to wait for services, and even more will be at risk of losing their services. Thank you.”

Contact Carol Ferenz or Cathy Barrick to register or if you have any questions.

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Statewide associations have been united in advocating for an increase of $430 million in state funds to the home and community-based waiver rates to offset the impact of actual inflation not included in these rates. This was in addition to the budget proposed by the Governor in March of this year. This $430 million in state funding would be matched by an additional $470 million in federal funding to the State.

HB 611 decreased the Governor’s proposal from March by $170 million for the Community Waiver line item, a decrease that represents the growing loss of services within our system. This decrease was a result of underutilization due to the lack of staffing, as individuals struggled to find providers available to support them in their communities.

The ID/A associations joined together to send a message to the General Assembly in a letter expressing our concerns for the viability of ID/A services in PA. Please share this letter with your legislators to ensure adequate funding for ID/A services.

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Today, June 5, members of the Coalition for the Preservation of Employment Choice and RCPA urged the PA General Assembly to preserve protections and programs meant for those with IDD, including preserving Section 14(c) of the Fair Labor Standards Act. Those speaking detailed how a loss of such programs would limit those with IDD to education and workplace options.

Richard Edley, PhD, President and CEO of RCPA, defended the programs, stating, “When you systematically limit choice, you are taking away a basic principle of helping people with disabilities.”

Also speaking at the rally was Colleen Stuart, CEO of Venango Training and Development Center, Inc., President of the Coalition for the Preservation of Employment Choice, and incoming Board Chair for RCPA. Colleen spoke of those with IDD in the workforce and education, asserting, “Without adequate rates that cover the cost of services, they will lose this choice, as providers will not be able to maintain.”

George Gwilliam of Cori’s Place, who also serves as an RCPA Board Member, was present, as well, speaking on behalf of those with IDD who would be impacted by the loss of protections.

Read the full press release here.

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