National Paralysis Resource Center
The mission of the national Paralysis Resource Center (PRC) operated by the Christopher & Dana Reeve Foundation is to improve the quality of life for people living with paralysis through grants, information, and advocacy. The PRC provides comprehensive information and navigation for people living with spinal cord injury, paralysis, and mobility-related disabilities and their families. Resources include information and referral by phone and email in multiple languages (including Spanish); a peer and family support mentoring program; a military and veterans program; multicultural and underserved populations outreach services; quality of life grants; and a national website with an online community. External evaluators from Vanderbilt University have been partners with the Christopher & Dana Reeve Foundation Paralysis Resource Center since September 2016 to rigorously evaluate all of the NPRC’s programs, services, and materials.
Learn the Model Systems Knowledge Translation Center: Spinal Cord Injury funded by ACL's NIDILRR.
- A resource center with dedicated information specialists; a resource-rich website containing customized materials including fact sheets, Paralysis Resource Guide, and educational and health promotion videos, booklets and wallet cards, all available at no charge to the public.
- A comprehensive outreach program dedicated to increasing the quality of life of individuals from underserved and minority communities including the African American, Native American, Hispanic, and Asian American populations. Other underserved populations which the PRC assists include people who are lesbian, gay, bisexual or transgender (LGBT), rural residents, people with limited or no English proficiency, those living in poverty, youth, seniors, the incarcerated or formerly incarcerated, individuals with substance abuse disorders, homeless individuals, those who are uninsured or underinsured, victims of abuse or crime, and people living with paralysis who have multiple co-occurring disabilities including psychiatric, emotional or sensory disabilities.
- The national Peer and Family Support Program provides certified trained peer mentors to assist individuals living with paralysis and related mobility impairments, their family members, and caregivers.
- A national Quality of Life program that awards grants to paralysis-focused nonprofit, community-based organizations so that they may implement programs aimed at improving the health, wellness, and independence of people living with paralysis and other mobility impairments, including a High Impact Innovative Assistive Technology grant category, making grants to state programs funded through the State Assistive Technology Act Program, and funding to support efforts to transition people living with paralysis from nursing homes to community living, respite care, and emergency preparedness.
- A public policy program that provides outreach and education to elevate the voices of people living with paralysis and their families through education and outreach efforts in the areas of community-based long-term services and supports, enhanced family caregiver support, health insurance, and access to rehabilitation technologies.
- A Military & Veterans Program (MVP) to include resources and community connections for service men and women, as well as veterans living with paralysis, whether through combat-related, service-related, or non-service-related events. The PRC serves veterans and military personnel who served in any era.
Christopher & Dana Reeve Foundation
636 Morris Turnpike, Suite 3A
Short Hills, NJ 07078
Paralysis Resource Center
Margaret Goldberg, Chief Operating Officer
Phone: (973) 379-2690 Ext 7206 or (800) 225-0292
Phone: (202) 475-2482
Paralysis Resource Center State Pilot Program Grants
- State of Pennsylvania Paralysis Resource Center
August 28, 2019 -- The Dept. of Physical Medicine and Rehabilitation at the University of Pittsburgh School of Medicine, in collaboration with the Human Engineering Research Laboratories, was awarded a two-year cooperative agreement totaling $399,292 from the Administration on Community Living. The project establishes a Paralysis Resource Center State Pilot program in Pennsylvania. The mission of the program is to improve the quality of life of Pennsylvanians of all ages living with paralysis and their caregivers by improving or increasing the services and supports offered by community-based disability organizations.
The State of Pennsylvania Paralysis Resource Center will provide grants of up to $25,000 to nonprofit, community organizations serving people with paralysis and their caregivers in Pennsylvania. Brad Dicianno, MD, who will lead the project, says that the program is meant to increase access or delivery of services to people living with paralysis; improve quality of life and community integration; and build partnerships among organizations within PA.
Several other faculty at the University of Pittsburgh (Rory Cooper, PhD; Michael Boninger, MD; Gina McKernan, PhD; Lynn Worobey, PhD, DPT; and Amy Wagner, MD) and Magee Rehabilitation (Marci Ruediger, PT, MS) will assist Dr. Dicianno in carrying out the program.
Community grant applications will be available in September 2019.
- Ohio Statewide Independent Living Council
August 28, 2019 -- The Ohio Statewide Independent Living Council was awarded a two-year cooperative agreement totaling $400,000 from the Administration on Community Living to work with community-based nonprofits serving individuals with disabilities to increase the knowledge and understanding of preparation for an emergency or disaster through the Emergency Preparedness Project. The grants will specifically target individuals with paralysis, as well as families and caregivers.
This grant is important because people with disabilities may be at greater risk of health issues, losing an accessible home, or other impacts that can be sustained during an emergency (such as fires, hurricanes, tornadoes, and more).
Through this project individuals with paralysis will have greater understanding of the preparation steps needed and the potential impacts to not planning ahead in case of a variety of emergencies. The organizations that will provide services will use multiple methods to inform and instruct individuals on the preparation for any potential situation that may arise.
Year 1 Subgrantees:
- The University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD) at Cincinnati Children’s Hospital Medical Center (CCHMC) has a vision that “all people, including children and adults living with disabilities, and their families, fully participate in society and live healthy, safe, self-determined, and productive lives.” As part of their Emergency and Disaster Preparedness Project, UCCEDD will conduct two training sessions that will include preparedness assessments and education on how to evaluate personal circumstances that will assist individuals in identifying the tools necessary to develop an emergency preparedness plan. In addition, UCCEDD will also facilitate two sessions in which emergency personnel and first responders will interact with individuals with disabilities and family members to facilitate learning and better understanding of needs during emergencies and disasters. Finally, UCCEDD plans to create a professionally developed training video that will be available online.
- Linking Employment, Abilities and Potential’s (LEAP) project will serve individuals residing in the counties of Cuyahoga and Lorain. The project includes a three-part training program for persons with paralysis and their family member/caregiver. A fourth component is the opportunity to get involved at the community level. The objective of this project is to provide 100 individuals with paralysis access to the resources needed to prepare adequately for situations of an emergency/disaster that could impact their continued community living; and to promote opportunities for meaningful participation in community level disaster planning for person with disabilities.
- The Center for Disability Empowerment (CDE) serves individuals residing in the counties of Franklin, Delaware, Union and Licking. Their project includes a conference addressing Emergency and Disaster Readiness for individuals with Paralysis, their families and caregivers, with additional smaller seminars in each of their four served counties. CDE will also engage with individuals after the trainings to answer questions and assist in personalized planning.
- University of Kentucky Human Development Institute Receives Grant to Help Serve Individuals with Paralysis
July 12, 2018 -- The University of Kentucky Human Development Institute (HDI) has received a three-year cooperative agreement totaling $600,000 from the Administration on Community Living. The project, Wellness Edge, is a Paralysis Resource Center State Pilot program grant. It will build connection within local communities to enhance and facilitate access to recreational programs to better serve people with paralysis and their support networks.
This fall, Wellness Edge will provide grants of up to $25,000 to community organizations that provide organized activities that are intentionally designed to benefit individuals, groups or communities. Chithra Adams, who will lead the project at HDI, said, "I am really excited to launch this effort for Kentucky. It will provide opportunities to develop new community partnerships and stimulate innovative ways to better serve people with paralysis and their networks of support."
Assisting Adams in the project are Jason Jones, founding member of the Kentucky Congress on Spinal Cord Injury, and Lindsey Mullis, HDI’s health and wellness director. This team will provide technical assistance and collect data that will ultimately help improve health outcomes for people with paralysis and build stronger, more inclusive communities.
Community grant applications will be available on the HDI website (www.hdi.uky.edu) in August.
An estimated 5.4 million people live with paralysis in the United States. The leading causes of paralysis are stroke, spinal cord injury, and multiple sclerosis. People impacted by paralysis are more likely to have health risk factors, such as being overweight, smoking and not being active; which put them at greater risk of developing secondary conditions such as cardiovascular disease and diabetes.
Year 1 Subgrantees:
- Kentucky-Indiana Chapter of Paralyzed Veterans of America for Statewide Introduction to Adaptive Sports Clinics ($24,800). KIPVA will host 3-5 statewide clinics, both single and multiday to provide individuals with spinal cord injuries and disease, as well as their families and other individuals that require the use of a wheelchair for athletics. A primary goal of this program is to allow every Kentucky Veteran with a qualifying injury to participated in the 2019 National Veterans Wheelchair Games in Louisville, Kentucky, and to encourage all participants to adopt adapted sports and recreation into their regular routine.
- Spina Bifida Association of Kentucky for Spina Bifida Family Camp ($10,000). SB Family camp creates a time where children with Spina Bifida and their families can spend a weekend without worry of being left out or treated differently because of their disability. At camp, there are no limitations and children can engage in activities they have never thought were possible. Camp offers fishing, horseback riding, archery, basketball, swimming, and much more. This camp is fully inclusive so the entire family has the opportunity to create memories and enjoy the full camp experience.
- LFUCG - Division of Parks and Recreation for Adaptive Adventures ($15,765). LFUCG Parks and Recreation Therapeutic Recreation, Adventure Programming and Easter Seals Cardinal Hill participants with paralysis embrace opportunities for fishing, kayaking, and canoeing at Jacobson Lake. Adventure Programming and Easter Seals Cardinal Hill offer these activities to veterans and individuals with spinal cord injury as they adapt to living with a disability. Adaptive watercraft is available on a limited basis and the dock needs upgrades in order to serve more persons with paralysis. The partners will purchase four outfitted kayak’s, transfer bench, kayak chariot, three cushions for positioning, six hand paddle and wrist adaptations, two paddle pivots and funding to send two people to the ACA Adaptive Paddling Summit.
- Community Foundation of Louisville for the Gathering Strength Fund ($24,850). The project will assist low-income people living with paralysis to participate in the therapeutic exercise opportunities at Frazier Rehab’s Community Fitness and Wellness (CFW) program in Louisville, which has been in operation for 10 years. The CFW, unique in our region, is an innovative program that operates much like a fitness gym, but provides accessible exercise opportunities to people with disabling conditions, including a wide range of wheelchair-accessible cardiovascular and strength-training equipment, and innovative therapeutic techniques such as neuromuscular electrical stimulation (NMES), and a body-weight support system over a treadmill that facilitates weight-bearing and stepping therapy. This project would provide financial assistance, on a sliding scale based on income, to help low-income people with paralysis afford the CFW fees.
- Fayette County Public Schools for The Inclusive Recreation Program ($24,999). The goal is to allow students with mobility issues (paralysis in particular) to participate in physical activities with their support network under the guidance of experienced adaptive recreation sponsors to provide physical, emotional, and social wellness to students. This program is an introduction to adaptive recreation for students middle and high school aged and an invitation to develop life long healthy habits and create pathways to additional recreation and potential competitive opportunities throughout the community. The equipment that will facilitate the program will be stored and used on site at the Academies of Bryan Station, but will be made available to all students in the Fayette County Public Schools district.
- Easter Seals Cardinal Hill for Adaptive Water Sports Program ($24,696). With this grant they will facilitate an Adaptive Water Sports Program kickoff event in the southern Kentucky region. It will be based at Pulaski County Park and will feature adaptive water sport recreation activities. They will have inclusive options for our adventure seekers such as sit water skiing as well as leisure activities such as adaptive kayaking. The goal of this program is to provide opportunities in Southern Kentucky for people with paralysis and other disabilities to experience adaptive water activities with their families and support networks. They will host a kickoff event in the spring to introduce the community to the program. After this event, they will offer summer long access via appointment to use the adaptive equipment purchased through the grant, making it a sustainable program.
- Center for Accessible Living for AT Expos for Recreation (24,000). The Center for Accessible Living (CAL) proposes to hold three expositions of assistive technology for recreation for individuals with paralysis and similar disabling conditions in the spring of 2019. The expos will feature equipment and programs that can enable individuals with disabilities to participate in a variety of recreational activities to improve and maintain their highest level of physical wellbeing possible. These three expositions will take place in locations CAL has offices, Louisville, Bowling Green, and Murray. This will enable local Center staff to assist in locating local vendors and exhibitors to participate in the expos, identify locations for the expos, and market the expos to individuals with disabilities.
- Bluegrass Tennis Association for Bluegrass Wheelchair Tennis Program ($13,652). The Wheelchair Tennis program will be a partnership between the Bluegrass Tennis Association, the Bluegrass Racquet Club with support from Easter Seals Cardinal Hill. This project is designed to provide a wheelchair tennis programming pathway to attract new players and give players opportunities to be frequent players. This pathway is designed to cycle four times a year with an eight week clinic followed by a one day fun tournament. This grant would cover three cycles beginning in November 2018 and completed by June 30, 2019.
Year 2 Subgrantees:
- Community Foundation for Louisville will hold an interactive workshop in Louisville, Kentucky, for people with spinal cord injuries and stroke in which they will learn the latest, specific guidelines about how physical activity can improve their health; they will be able to engage in such exercise at the event; and they will learn about how they can continue to engage in such exercise in the future in the community by having the opportunity to receive information from organizations that provide physical activities. Likewise, these community organizations will learn about the latest evidence-based guidelines on physical activity so that they may implement that knowledge in their programs.
- Independence Place -- The Social, Healthy, Adaptive Recreation & Exercise (SHARE) project improves health outcomes for people with/without paralysis through recreational events. Each event is integrated and adapted for people of all abilities. The purpose of each event is to promote community inclusion, encourage healthy activity routines, and lessen the impact of secondary health complications associated with paralysis. SHARE is innovative in that it emphasizes the commonality between people with/without paralysis, features continuous wellness events throughout the year, and creates a venue that fosters discussion and understanding about health and wellness from varying perspectives. SHARE will be led by Independence Place and supported by Cardinal Hill Hospital's Spinal Cord Injury unit, the LFUCG Division of Aging and Disability Services and Parks and Recreation.
- Warren Co. Parks will increase accessibility for watersports by installing access mat from the parking area to the river bank at Phil Moore Park and purchasing adaptive equipment. Specifically, they will purchase 200 feet of access matting, two wheelchairs that are submersible and float, and smaller adaptive equipment to support kayaking and canoeing.
- IdeasX Lab -- The Our Wellbeing program builds on IDEAS xLab's approach for leveraging community creativity and culture to transform lives. It focuses on co-creating arts-based experiences with individuals with paralysis and their support networks to measurably impact hope and wellbeing. By pairing participants with one or more artists with their lived experience, Our Wellbeing will generate arts-based activities and learnings for others to use in the future that are created using universal design.
- Easter Seals Cardinal Hill Adaptive Recreation will create an Adaptive Recreation Educational Program that has two objectives --Objective 1: Present information and activities to individuals in physical rehabilitation settings with spinal cord injuries, mobility limitations or paralysis, their families and support networks. This program will highlight the importance of adaptive recreation for the social, mental and physical well being and increased quality of life. These sessions will include educational hands on experiences where people can try equipment and activities for themselves, as well as hear from community members who lives life to the fullest with a spinal cord injury. Objective 2: Present educational sessions to students on the importance of adaptive recreation and inclusionary activities, as well as universities to educate future professionals going into the medical, rehabilitation and education professions of the importance and availability of adaptive recreation for individuals and their support networks.
- The Ethan Foundation mission is to promote a proactive, healthy lifestyle for the youth of Bowling Green, Ky., and surrounding areas. This way, healthy habits are formed at an early age and taken all the way into adulthood. The Ethan Foundation recognizes the lack of exercise activities designed for and promoted toward adaptive athletes in the south central Kentucky region. As a nonprofit organization already implementing long-term CrossFit and other exercise programming, The Ethan Foundation will expand its reach to effectively serve adaptive athletes and their support networks. The Ethan Foundation will grow its current CrossFit Kids and CrossFit Teens offerings to be more accessible to those individuals with paralysis, amputation, or any other condition or disability that does not allow for traditional range of motion. This project will be successful through the purchase of adaptive equipment, effective marketing, and additional professional development for coaches.
- KY_IN Paralyzed Veterans of America -- With grant support, the success of this program can launch a new KIPVA initiative to provide skilled, certified sports specialists in a variety of settings to capitalize on existing accessible venues via adaptive programming and instruction, including cross fit, golf, and swimming.
- Texas State Independent Living Council Receives Federal Grant to Serve Texans Living with Paralysis in Rural Areas
December 14, 2018 -- The Texas State Independent Living Council (SILC) has received a three-year cooperative agreement totaling $600,000 from the Administration on Community Living to assist the needs of over three million Texans living with disabilities. The Virtual Independent Living Services Project is a Paralysis Resource Center State Pilot program with the goal to build supports and services to Texans with disabilities living with paralysis in unserved or underserved areas of the State.
February, 1, 2019, Texas SILC will award up to five Virtual Independent Living Services grants of up to $40,000 to community-based disability organizations to leverage a tele-health platform to provide Independent Living Services to Texans living with paralysis. Community grant applications are available on Texas SILC’s website at: https://www.txsilc.org/projects/vils.html.
An estimated 5.4 million individuals live with paralysis in the United States. The leading cause of paralysis is stroke, spinal cord injury, and multiple sclerosis. The purpose of the project is to bring Independent Living Services to Texans living in rural or underserved areas of the state. Texas SILC is looking forward to building community partnerships and will be accepting applications for the project until 5:00 pm Central Standard Time, Tuesday, January 22, 2019.
Texas SILC is a nonprofit organization federally authorized under the Rehabilitation Act of 1973 and reauthorized by Workforce Innovation and Opportunity Act of 2014 (WIOA) to provide a strategic framework for Independent Living Services in Texas. WIOA provided the SILC resource development authority to support the State Plan for Independent Living. The Texas SILC is led by a Governor-appointed Council. More information about the Texas SILC and its initiatives may be found on its website at: www.txsilc.org.
“The Virtual Independent Living Services Project is an innovative project that further unites Independent Living Services to Texans living with paralysis in unserved and underserved areas of our vast Lone Star State. The Administration on Community Living through this cooperative agreement will build upon a coalition of direct service providers that will construct a virtual bridge that unites Texans living with paralysis across Texas,” said Texas SILC Chairman Colton Read.
Inquiries regarding the Virtual Independent Living Services Project may be directed to: VILS@txsilc.org.
Year 1 Subgrantees:
- Heart of Central Texas Independent Living (HOCTIL) to ensure Texans living with paralysis in the rural and underserved communities served by HOCTIL experience decreased isolation and be better connected with peers. They will ensure VILS will also increase coalitions between community-based organizations that provide supports and services to Texans living with paralysis. Further, the individuals served through this project will have enhanced employment opportunities. Of the 13 counties HOCTIL will serve through this grant, seven are “Unserved Counties” and four are “Underserved Counties” as listed in Section 3.2 of the Texas State Plan for Independent Living. HOCTIL has provided services in these counties to include obtaining accessible housing, understanding consumers’ benefits, advocating for accessible transportation and housing, Relocation Services, and Independent Living Purchase Services. Through these efforts, HOCTIL discovered the lack of accessible transportation, which contributes to isolation and adversely affects their mental and physical health.
- NMD United to leverage technology to reach underserved and unserved individuals living with paralysis. In 2014, NMD United became the first and only peer-led, non-profit organization focused on providing Virtual Independent Living Services to adults living with neuromuscular disabilities (NMDs). Soon thereafter, NMD United launched its first chapter for Central Texas members and recently started a subsequent chapter in Houston. Since its incorporation, NMD United has served approximately 2,000 people.
- National Spinal Cord Injury Association Houston to send electronic-based invitations and hardcopy flyers to 50 nursing homes across Houston and Greater Houston (notably a service population of over 6 million Texans). The organization is committed to partner with the Houston Center for Independent Living and Mayor’s Office for People with Disabilities to identify and connect with other facilities serving people with paralysis.
Year 2 Subgrantees:
- Mounting Horizons will use their award to empower individuals to build personal resilience and improved help-seeking behaviors through increased knowledge of available supports, development of positive coping strategies, and independent living skills. To maximize the potential to lead productive lives in their homes and communities, Mounting Horizons will target adults, youths, veterans, and individuals living in institutions and nursing homes. Mounting Horizons will provide virtual independent living services to increase transportation options, increase employment opportunities, increase community supports and social opportunities, and develop advocacy skills. Virtual training services will be offered weekly in group and one-on-one sessions and address general issues and supports. Social interaction, self-esteem, and confidence-building will be at the core of each training. Mounting Horizons will specifically target veterans and youth by reaching out to organizations, schools, group homes, and community-based organizations to disseminate program details and encourage participation.
- Valley Association for Independent Living (VAIL) will provide services to greater Rio Grande Valley through their virtual independent living program named 'Bridging the Gap". VAIL will provide services to people living with paralysis in predominantly Hispanic/Latinx and low-income communities who speak predominantly Spanish. Bridging the Gap will provide the tools necessary for maximum independence and community participation to address the needs of people living with paralysis-related disabilities, their families, caregivers, and the community. Bridging the Gap's goal is to provide information on learning healthy eating habits and accessing awareness, consultation, and training to people with paralysis-related disabilities. VAIL will specifically develop culturally appropriate training materials, increase awareness through education by creating a video on accessibility in adaptive fitness exercises, and develop an accessible curriculum for people with paralysis-related disabilities and develop skills for people with paralysis related disabilities towards cooking and eating healthier.
- LIFE Inc. will focus their award on individuals living with paralysis in underserved and unserved areas in west Texas. This sub-recipient will focus their award on approximately 100 individuals in over 30 counties with disabilities residing in institutions, nursing homes, and community homes. LIFE Inc. will provide virtual learning services concentrating on increasing community integration, money management, assistive technology, employment, decreasing isolation, and increasing access to services. LIFE Inc. will increase access to IL services for individuals living with paralysis in the environment they choose by building awareness and initiate participation among consumers. This sub-recipient will use the virtual services to provide live, interactive group and one-on-one IL services, offer online training seminars on SSA work incentives, job readiness training, and assistive technology seminars. Additionally, LIFE Inc. will contact Managed Care Organizations (MCO), and nursing facilities to identify individuals with paralysis who wish to relocate into the community.