DearColleague.us

Letter


Sending Office: Honorable Leonard Lance
Sent By:
Robert.Butora@mail.house.gov

Support the Paralysis Resource Center within the Administration for Community Living

 

***this is a programmatic request***

 

Deadline: March 14, 2018

 

Dear Colleague:

We want to invite you to join us on a letter to the House Appropriations Committee expressing support for the Paralysis Resource Center (PRC) within the Administration for Community Living. The PRC was created in 2002 to help those living with paralysis
and their caregivers to achieve an independent, high quality of life.

The PRC has been proposed for elimination in the Department of Health & Human Services’ FY19 budget. Simultaneously, the Administration for Community Living has proposed using appropriated funds for the creation of a state-based pilot program that would
unnecessarily duplicate current efforts, dilute the impact of services and supports, and create unnecessary bureaucracy.

Since its creation the PRC has helped hundreds of thousands of mobility-impaired Americans through a proven network of programs that span the country. These services and supports do not exist within any other federal entity, and their loss would be catastrophic
to the 5.4 million Americans living with some form of paralysis. In fact, the assistance and consumer savings achieved by the Paralysis Resource Center are many times its current funding.  We ask you to join us in restoring the PRC’s funding to its FY 2017
level of $7,700,000 and urge the Administration to preserve the PRC as currently structured in order to maintain consistent and effective direct services, networks, and volunteer coordination.

For more information or to sign on, please contact Elyssa Malin (x52735, Elyssa.Malin@mail.house.gov) or Robert Butora (x55361, Robert.Butora@mail.house.gov) Thank you for your consideration.

Sincerely,

Jim Langevin                                                              Leonard Lance

Member of Congress                                                  Member of Congress

 

 

 

The Honorable Tom Cole                                           The Honorable Rosa DeLauro

Chairman                                                                     Ranking Member

House Appropriations Subcommittee on                    House Appropriations Subcommittee on

Labor, Health and Human Services,                           Labor, Health and Human Services,

Education and Related Agencies                                Education and Related Agencies

U.S. House of Representatives                                   U.S. House of Representatives

Washington, D.C. 20515                                            Washington, D.C. 20515

 

Dear Chairman Cole and Ranking Member DeLauro:

As Members of Congress who support the 5.4 million Americans living with paralysis, their families, and their caregivers, we write to respectfully request an appropriation of $7,700,000 in FY 2019 for the Paralysis Resource Center (PRC) within the Administration
for Community Living (ACL). We also urge you to preserve and continue a single national PRC, rather than supporting ACL’s recently announced pilot program to establish state-based PRCs.

The PRC was created in 2002 to help individuals living with paralysis achieve an independent, high quality of life as well as assist those who care for them. Five years ago, the PRC was transferred from the Centers for Disease Control and Prevention (CDC)
to ACL where it serves as an anchor for the disability community. This transfer created a series of new opportunities to address the problems faced by individuals and families living with paralysis and to develop programs tailored to support independent living
within the disability community.

The PRC has expanded to include a network of Information Specialists, a number of veterans’ initiatives, a Peer and Family Support Program, a substantial Quality of Life Grants Program, and a NeuroRecovery Rehabilitation Network. These programs—outlined
further below—do not exist within any other federal entity. Eliminating federal funds, as proposed in the Administration’s FY 2019 budget, would jeopardize vital services and supports for paralyzed Americans.

We are also concerned that creating a PRC state-based pilot program, as proposed by ACL, would dilute the impact of the services and supports provided by the PRC in its current form. In addition, the state-based pilot program would be duplicative of the
exemplary efforts of the PRC, which already provides help and guidance to hundreds of thousands of mobility impaired Americans in all 50 states.

As such, we believe that the PRC should be preserved as currently structured, and that restoring the PRC’s funding to the FY 2017 level of $7,700,000 is necessary to maintain consistent and effective direct services, networks, and volunteer coordination.

Quality of Life Grants

The Quality of Life Grants Program strives to empower individuals with disabilities and their families by providing grants to nonprofit organizations that improve quality of life through inclusion, access, independence, opportunities for community engagement,
and other life-enhancing endeavors. Since 1999, the PRC’s Quality of Life Grants Program has directed over $23 million to 3,000 projects in all 50 states. However, this program is only able to fund about 25 percent of the requests it receives for grants, leaving
many worthy initiatives without the resources needed to make a difference in the lives of families living with paralysis.

Information Specialists

Information Specialists are a core feature of the PRC. Trained specialists, some living with paralysis themselves, provide personalized support to help individuals and families navigate the vast amount of information and services available for those living
with paralysis. The PRC’s five Information Specialists are full-time employees trained to answer any question related to paralysis, including Spanish language inquiries. Since 2002, the PRC’s Information Specialists have provided direct counseling to over 88,000 people
and have helped hundreds of thousands more through the PRC’s Paralysis Resource Guide, which is downloadable online and a staple in hospitals and rehabilitation facilities across the country.

Peer and Family Support Program

The Peer & Family Support Program is a national network that creates connections for people living with paralysis, their families, and caregivers. There are 300 peer mentors in 43 states that have provided support to approximately 8,000 people who receive
mentoring through in-person meetings, telephone, e-mail, and videoconferencing. In recent years, the PRC increased its virtual trainings to increase and diversify its peer mentor pool and made extensive revisions to its training curriculum. Since its inception
in 2011, the Peer Program has also mentored more than 1,500 caregivers, providing an important peer support network for individuals who are often underserved.

Military and Veteran Program

The PRC helps service members navigate their military benefits and combine them with civilian programs to foster high levels of health, well-being, and independent living. The services are provided regardless of the era in which they served or how their
injury was obtained. In addition, the Military and Veterans Program Advisory Council was formed to better identify and define the needs of service members as well as leverage, develop and maintain collaborative relationships with other national and local organizations
that serve the military and veterans’ community. The MVP Council is a group of trained volunteers who are retired service members, civilians, and caregivers with ties to the various branches of the Armed Services. Council members serve as a bridge to access
the Veterans Administration and other military and veteran programs and services.

NeuroRecovery Network

The NeuroRecovery Network (NRN) supports specialized centers across the country to provide standardized activity-based rehabilitation, including a highly effective locomotor training therapy. Established in 2005 with a base of rehabilitation hospital NRN
centers, the NRN has now grown into a program that includes twelve innovative rehabilitation centers throughout the country. The NRNs develop and deploy therapies to promote functional recovery and improve the health and quality of life for people living with
paralysis. The work being done at the NRNs is improving health outcomes as well as increasing functional outcomes for individuals facing mobility impairments. 100 percent of patients who have undergone NRN training have reported improved health outcomes.

In light of the difficult funding decisions you have to make, we want to emphasize how vital the PRC is to those living with paralysis and their families and caregivers. As such, we urge the inclusion of $7,700,000 for the PRC in the FY 2019 Labor, Health
and Human Services, and Related Agencies appropriations bill.

Thank you for your consideration.

 

Jim Langevin                                                                         Leonard Lance

Member of Congress                                                              Member of Congress

 

 

 

 

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Selected legislative information: HealthCare

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