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
- PRC State Pilot administrative survey and COVID-19 impact
The COVID-19 pandemic significantly affected the Paralysis Resource Center (PRC) state grantees and their subawardees. The documents below display responses from the four state pilots and 26 of their subawardees on the impacts as of May 2020. As the pandemic progressed, they have had to rethink how they will continue serving individuals with paralysis through inclusive and accessible activities.
- State of Pennsylvania Paralysis Resource Center
November 4, 2020 -- PA State Pilot Reference Sheet
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.
Year 1 Subgrantees:
- IM ABLE Foundation's mission is to remove obstacles that prevent people affected by disabilities from being physically active. The organization will purchase adaptive mountain handcycles. The handcycles will have upgraded electronic assistance to accommodate people who do not have the necessary arm strength to ride on their own. With these adaptive mountain handcycles, they will be able to offer new opportunities to individuals with a wide range of adaptive needs. The funds will also be used to cover maintenance and program costs. The organization expects to increase the total number of rides and riders per year and plans to add a shorter group ride once per week and a longer ride once or twice per month. IM Able Foundation is located in Eastern PA in Wyomissing.
- Harmarville Outreach Programs and Education (HOPE) Network is a non-profit community-based that provides education and adaptive sports and recreation programs and services to individuals with paralysis and their families, friends, and caregivers. The Juniors Adaptive Sports and Recreation program is part of the HOPE Network Healthsports Program and provides education and adaptive sports and recreation programming geared to children of all ages. The funding will enable the purchase of pediatric sports wheelchairs that are specifically designed to meet the needs and sizes of different wheelchair basketball players. The HOPE network expects that adding the new chairs will increase attendance and the number of new participants with paralysis and will improve fitness as measured by body fat analysis, strength, quickness and speed. The organization is located in western PA in Pittsburgh.
- The Center for Independent Living of South Central Pennsylvania's mission is to help individuals live life independently. Funding will be used to carry out bi-monthly three-hour long sessions within the POWER (People, Opportunities, Wellness, Education and Resources) Program. They will invite individuals and their caregivers whose lives are affected by paralysis to participate in this program that offers appropriate physical exercise, as well as educational opportunities in a social recreational environment. They anticipate an increase in attendance; improvements on health screenings; perception about general health, quality of life, and exercise; and participant satisfaction. They also expect to see reduced stress levels. The organization is located in south central PA in Altoona.
- The Inglis Foundation's mission is to enable people with disabilities – and those who care for them – to achieve their goals and live life to the fullest. Inglis’ oldest service is Inglis House, a 24/7/365 residential skilled nursing facility serving up to 252 younger adults (all wheelchair users) with paralysis-causing conditions such as multiple sclerosis, cerebral palsy and spinal cord injury. Inglis will purchase and customize eight content modules of a mobile digital engagement technology application called Mozzaz for clients of Inglis Community Support Services (CSS). Mozzaz enables high-need, high-cost, complex care patients and their caregivers to use adapted information technology to directly engage with the services they are receiving. The content modules within the Mozzaz will support eight CSS programs. They will measure the impact of the software on the number and quality of virtual visits, satisfaction with services, and comfort with the technology. Founded in 1877, Inglis Foundation is located in eastern PA in Philadelphia.
- Pennsylvania Center for Adapted Sports' (PCAS) mission is to improve the health and well-being of individuals with disabilities. This is achieved through a two-part approach. First, programs are designed specifically for people with disabilities that feature sports, recreation, wellness, and fitness education programs. Second, they work to provide inclusion in community and scholastic programs including sports, recreation, wellness, and fitness education programs. The funding will allow acquisition of adaptive handcycle and ski equipment designed to facilitate the participation of people with paralysis. The equipment will expand their present capacity to be able to include those with some of the highest levels of impairment. They will measure the number of unique participants that will use the equipment, activity duration and frequency of equipment use, and satisfaction with the new equipment. PCAS is located in eastern PA, in Philadelphia.
- The Fighting Back Scholarship Program (FBSP) was created in 1989 to assist individuals who had survived life-changing illnesses or injuries and who were without the finances needed to participate in a rehabilitative exercise program. Recognizing that medical insurance usually runs out long before all rehabilitation needs are met, FBSP seeks to extend rehabilitation through individualized fitness programs and personal training. Fighting Back fitness training helps individuals develop and maintain mobility, strength, and increases confidence. It also provides a welcomed and necessary connection for individuals to a community and other people. Funding will be used to provide additional scholarships to individuals who are living with paralysis. These scholarships consist of one-to-one fitness training in one of two Fighting Back locations. Individuals and their family members/caregivers are welcomed. Sessions will be offered one time per week for over the course of a year (52 one-hour sessions). At the conclusion of the scholarship training period, individuals and their family/caregivers will be provided with specific recommendations for continued exercise at home or in the community. They expect to see improvements in the World Health Organization Quality of Life Brief Scale (WHOQOL BREF) in both participants and caregivers. This organization is located in eastern PA in Malvern.
Year 2 Subgrantees:
- The Magee Rehabilitation Hospital Foundation will use funds to purchase supplies for their art therapy program. The therapy program will use drawing, painting, sculpture, clay modeling, and a variety of other creative outlets as an addition to existing care, to further promote successful rehabilitation of people with paralysis. The Foundation expects the program to improve emotional and physical recovery. The Magee Rehabilitation Hospital Foundation is located in Philadelphia, PA.
The Pittsburgh Curling Club opened a brand-new curling facility in McKees Rocks, PA, that provides opportunities for people to participate in this unique Olympic sport. They will use funds to support equipment and training to allow full inclusion. They anticipate increasing participation of people with paralysis and improvements in quality of life as a result of that participation.
Disability Options Network is a grass roots advocacy organization concentrating on disability rights issues, as well as skills training, peer support, transitioning, and information and referral services. They will expand wellness and fitness services to their location in New Castle, PA, and offer in-person and virtual fitness programs, support groups, and cooking classes to people with paralysis. They anticipate improvements in the ability of participants to reach specific fitness and wellness goals as a result of participation.
The AbleGamers Charity in Pittsburgh, PA, provides people with disabilities custom video gaming setups including modified controllers and special assistive technology. They will use funds to support a peer program that matches individuals with paralysis with the right technology and gaming networks and technology packages for inpatient spinal cord rehabilitation programs. They expect to see improvements in quality of life in those who engage in their program.
Mighty Penguins Sled Hockey operates therapeutic and competitive ice hockey programs for the benefit of individuals with disabilities in Pennsylvania and adjacent areas. The funding from this award will be used to support equipment and programs so that people with paralysis can participate in this sport. They expect improved skills and higher number of people with paralysis participating on the teams. The organization is located in Coraopolis, PA.
The Metropolitan Area Neighborhood Nutrition Alliance in Philadelphia, PA, aims to improve health for people with serious illnesses who need nourishment to heal. They will use funding to provide medically tailored meals and nutrition education to individuals with paralysis with pressure injuries of the skin. They expect significant wound healing and improvements in a number of health outcomes.
- Ohio Statewide Independent Living Council
November 4, 2020 -- OH State Pilot Reference Sheet
July 1, 2019 -- The Ohio Statewide Independent Living Council (Ohio SILC) was awarded a three-year cooperative agreement totaling $400,000 from the Administration for Community Living. The Emergency Preparedness Project is a Paralysis Resource Center State Pilot program.
The anticipated outcomes of this pilot include Ohioans with paralysis will increase their skills and knowledge of emergency/disaster preparedness, community-based organizations will have increased capacity to serve individuals with paralysis, and family and caregivers will become better equipped to support the individual with paralysis in an emergency/disaster situation.
November 1, 2019 -- Ohio SILC awarded three subgrants for Emergency Planning of up to $25,000 to community-based disability organizations to create opportunities for Ohioans with paralysis, and their family/support systems, to increase the education and development of skills needed to appropriately respond in the event of an emergency/disaster including preparation, response during and recovery in the aftermath.
The Ohio SILC is responsible for developing, implementing, and monitoring of the State Plan for Independent Living, a three-year strategic plan for Ohio to work towards goals of greater access, inclusion, and independence; coordinating activities with other entities that provide services similar or complementary to Independent Living Services; assisting to develop the network of Centers for Independent Living; and conducting regular meetings of the Council that are open to the public. We achieve our goals in working with the 12 Centers for Independent Living, working with state agencies in Ohio, and educating the community.
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.
Services for Independent Living (SIL) will develop a partnership through the County Boards of Developmental Disabilities and Western Reserve Area Agency on Aging to conduct meetings involving staff and consumers to gather input from Lake, Geauga, and Cuyahoga Counties for developing a guide for service plan development. One of the goals is to be able to develop a professional training guide for case managers to enhance their skills for assisting persons with disabilities in emergency preparedness development. Another goal of the project is to develop worksheets for consumers to use when forming emergency preparedness plans including issues to consider when sheltering in place, evacuating the home, or moving to a temporary shelter.
- University of Kentucky Human Development Institute Receives Grant to Help Serve Individuals with Paralysis
November 4, 2020 -- KY State Pilot Reference Sheet
September 2020 -- The “Staying Apart Together” virtual event was hosted by the Wellness Edge grant on September 16, 2020. Wellness Edge aims to increase the quality of engagement for individuals with paralysis and their support networks, (including caregivers, family, and friends) in recreational settings, and thereby improve health outcomes of not only the individual, but also their support network, by building capacity of local communities to enhance and facilitate access to recreational programs so they might effectively serve individuals with paralysis and their support networks. The grant is funded by the Administration on Community Living (ACL). The project is housed at the Human Development Institute, University of Kentucky.
The event was broken down into sections as follows: Introduction by Kathy Sheppard-Jones, Warm-up activity by Jason Jones, Adaptive Golf by Vickie Links, Health Activity by Lindsey Mullis, and Adapted Sports by Judy Morrison and Jeff McGinnis. With many people in isolation due to the current COVID-19 pandemic, this virtual event was organized to create a platform that could reach people and provide ideas, resources, and activities that could be accessed from home. Interspersed between each activity was quick group interacting polling. A total of 25 participants responded to the survey. All participants indicated they had watched the event through zoom. View the evaluation report for this virtual event.
July 2020 -- The “Staying Apart Together” virtual event was hosted by the Wellness Edge grant on June 18th, 2020. Wellness Edge aims to increase the quality of engagement for individuals with paralysis and their support networks, including caregivers, family, and friends in recreational settings, and thereby improve health outcomes of not only the individual but also his or her support network by building capacity of local communities to enhance and facilitate access to recreational programs, so they might effectively serve individuals with paralysis and their support networks. The grant is funded by the Administration on Community Living (ACL). The project is housed at the Human Development Institute, University of Kentucky.
With many people in isolation due to the current COVID-19 pandemic, this virtual event was organized to create a platform that could reach people and provide ideas, resources, and activities that could be accessed from home – with agenda items including CrossFit, social distancing in parks, and health check-ins. Interspersed between each activity was quick group interacting polling.
A total of 421 individuals registered for the event through Zoom and YouTube Live. Individuals who attended the virtual event were asked to participate in a short evaluation. 74 individuals responded to the evaluation, with 13 respondents identifying that they had a disability, 9 respondents identifying that they were a family member or caregiver or a person with a disability, 69 respondents identifying that they were another type of professional (such as a paraprofessional, classroom student, state partner, community partner, or other), 4 respondents identifying that they had paralysis, and 12 respondents identifying that they were part of a support network. Respondents could identify as belonging to more than one group.
This report is organized into six sections: Section 1: Overall, Section 2: Individuals with Disabilities, Section 3: Family Members, Section 4: Other Professionals, Section 5: Individuals with Paralysis, and Section 6: Support Networks. There is also an appendix which includes all qualitative responses submitted by respondents. View the evaluation report for this virtual event.
May 2020 -- The ‘Staying Apart Together’ virtual event was hosted by the Wellness Edge grant. Wellness Edge aims to increase the quality of engagement for individuals with paralysis and their support networks, including caregivers, family, and friends in recreational settings, and thereby improve health outcomes of not only the individual but also his or her support network by building capacity of local communities to enhance and facilitate access to recreational programs, so they might effectively serve individuals with paralysis and their support networks. The grant is funded by the Administration on Community Living (ACL). The project is housed at the Human Development Institute, University of Kentucky.
With many people in isolation due to the current COVID-19 pandemic, this virtual event was organized to create a platform that could reach people and provide ideas, resources, and activities that could be accessed from home, in an interactive environment with other attendees. The virtual event agenda was as follows – introduction by Dr. Kathy Sheppard-Jones (Executive Director, Human Development Institute) and Ms. Elizabeth Leef (ACL, grant project officer), Zumba, Yoga, Virtual Arts, Virtual Peer Meetings, and Instructions to Google Hangouts. Interspersed between each activity was quick group interactive polling.
A total of 350 individuals participated in the event through Zoom and YouTube Live; with approx. 200 individuals participating on YouTube Live and approx.150 individuals participating in Zoom. Individuals who attended the virtual event were asked to participate in a short evaluation. 100 individuals responded to the evaluation, with 20 respondents identifying that they had a disability, 6 respondents identifying that they were a family member or caregiver of a person with a disability, and the remaining 74 respondents not belonging to either of those groups. View the evaluation report for this virtual event.
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.
Year 3 Subgrantees:
- Adaptive Sport South Central Kentucky, Bowling Green Parks & Recreation -- Adaptive Sport South Central Kentucky is the adaptive sports program established within the Bowling Green Parks and Recreation Department. The program provides opportunities for individuals with physical disabilities to find their own success in the world of sport. As part of an ongoing implementation strategy and program expansion, they will roll out a few program initiatives, including: competitive wheelchair basketball for youth and adults, adaptive water sports in partnership with Warren County Parks and Recreation, an inclusive archery program, and sled-hockey demonstrations at a local ice-rink.
- Adaptive Recreation Programming Project, Easter Seals Cardinal Hill -- The project focuses on adaptive recreational activities for children and adults with spinal cord injuries, mobility limitations, or paralysis, along with their families and support systems. They offer opportunities with the recently opened Easter Seals Cardinal Hill Pediatric Outpatient Therapy Program and will implement adaptive recreation opportunities for these children and families. This project also builds upon and expands the Adaptive Recreation Educational Sessions program for both children and adults in the state, including “hands on experiences” where people try equipment and activities for themselves. This program is flexible allowing for tailored opportunities to be presented at schools to educate students on the importance of inclusionary activities, as well as colleges/universities to educate professionals going into the medical, rehabilitation, and education professions.
- Stroke Camp, KARRN -- The Kentucky Appalachian Rural Rehabilitation Network (KARRN) in collaboration with the Hazard Stroke Survivor and Caregiver Support group will hold an outdoor recreational and educational event to support individuals affected by stroke and their families living in Appalachian Eastern Kentucky. This Rural Appalachia Stroke Camp will be hosted at Buckhorn State Resort Park in Perry County Kentucky and will include adapted recreational activities, educational activities, and free health assessments. This camp will also provide an opportunity for students from multiple healthcare programs the opportunity to volunteer with the community members they are training to serve.
- Online Drone Class, KIPVA -- Kentucky – Indiana Chapter of Paralyzed Veterans of America (KIPVA) is offering online classes. Drone piloting is one of the most requested activities from KIPVA members. Partnering with the Louisville Drone Academy and presenting as a series of online classes makes it possible to cover all of the necessary curriculum to prepare participants to safely and legally fly a drone. This is an activity that can be enjoyed both at home and as part of an event. This course will provide an introduction to safe flying as well as drone photography and videography. KIPVA will continue to work with the Drone Academy and any interested participants to continue their education toward becoming a certified drone pilot and any interest in developing skills that could assist with a drone flying career. Instruction will include a socially distanced/individual day of in person flying with an instructor. The class will end with the submission of photography or videography from each student to be shared on social media. Participants that successfully complete the first three online classes will be provided with a drone of their own to fly for the second half of the class.
- Adaptive Curling, Derby City Curling Club -- Derby City Curling Club is an inclusive organization that welcomes people of all ages and abilities. As the first curling club in Kentucky, we teach, develop, promote, and increase interest in the sport of curling. The goal with Wellness Edge is to introduce an adaptive curling program that allows those with mobility issues and paralysis to participate in curling with their family and friends, foster new friendships, and create opportunities to compete at their interest level. At the beginning of the on-ice season, they will host a second adaptive curling clinic, with a focus on wheelchair curling. Participants with paralysis or who use wheelchairs will have the opportunity to work with the equipment and learn the basics of curling. Participants and their caregivers will learn how to work together and within a team. After the clinic, participants are encouraged to join the club, allowing them to join inclusive play on a weekly basis with other members, including leagues, and to take part in our club’s social events. They will also have the opportunity to compete in tournaments against regional and national competition.
- Group Health and Wellness, Gathering Strength -- This project will provide group adapted health and wellness activities/classes for people with paralysis and their family caregivers. The group activities will be virtual (using video-conferencing), and in-person (only when safe and advisable). Activities for people with paralysis may include stress reduction, stretching, breathing, and cardiovascular exercise. Activities for family caregivers may include relaxation, exercise, and discussion/support. Assistance will be provided to help up to 10 people, who cannot otherwise afford it, to obtain access to high-speed internet so they can participate. The content and format of the classes (such as length and frequency of classes, and type of activities) will be designed and continually improved based on participant feedback to assure success in continuing to provide classes in the future. The project also will train yoga and exercise teachers to conduct adapted classes, thereby increasing the capacity for providing adapted activities in the Louisville area.
- Project ACCESS, IPKY -- Independence Place, Inc. (IPKY) through one of its peer-led, peer support programs known as Let’s Roll Kentucky, is offering Project ACCESS (Adaptive Cooking Class, Education, Safety, and Sustenance). The aim of ACCESS is to bring together individuals with and without paralysis through recreational events to improve health outcomes. Each event is integrated and adapted for people of all abilities. Specifically, ACCESS will provide adaptive cooking classes designed for individuals with paralysis and open to individuals of all skill levels. These classes will focus on healthy eating, safety in the kitchen, adaptive kitchen utensils, and how to incorporate exercise and other healthy habits into daily modified routines. In addition to the scheduled cooking classes, ACCESS will develop and share online resources on various topics. This may include demonstrations on how to use adaptive equipment, customized information, physical and/or virtual tours of accessible kitchens, safety demonstrations, and more.
- Texas State Independent Living Council Receives Federal Grant to Serve Texans Living with Paralysis in Rural Areas
November 4, 2020 -- TX State Pilot Reference Sheet
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.
Disability in Action (DIA) will provide services to Abilene, Texas, and the surrounding 27 counties. DIA's goal will be to provide a safe place where people can ask questions and be active contributors to the Virtual Independent Living Services (VILS) project. The focus of the VILS project will include employment, assistive technology, self-advocacy in healthcare, and managing care attendants. Employment: participants will become aware of at least three opportunities (paying or non-paying) for employment or volunteerism. Participants will know and understand job listings, and the requirements from an online employer, through guidance by the instructor. Participants will explore their strengths and learn how to tailor their resume when responding to a job posting. Assistive Technology: This four-part series will help participants share information about assistive technology for activities of daily living and recreation. Everyone has different needs and abilities. New technology will be an important part of the discussion. One of our contributors will talk about gaming equipment. Online resources will be explored. DIA can also provide information about its program sponsored by University of Texas at Austin. Self-Advocacy in Healthcare: Navigating an ever-changing System- In this series, DIA will arrange a webinar with both an MCO case manager and an HHSC staff person. Managing attendant care: Family, Friends and paid attendants- With this module, DIA will discuss attendant care and provide personal stories and experiences navigating Medicare.
- Brazos Valley Center for Independent Living (BVCIL) will use their award to address state-level priorities for providing independent living services to unserved or underserved populations in the counties of Brazos, Burleson, Grimes, Madison, Robertson, Walker, and Washington. During this project, BVCIL will offer 12 one-hour virtual fireside chats designed to provide information, peer support, and resources through generation of foundational self-advocacy skills to stretch beyond the pilot project. Each fireside chat will have one or two guests and a moderator. The moderator will have a few topical questions designed to illicit conversations between the guest(s) and the participants. The fireside chats will consist of a variety of topics including; working while receiving social security disability, affecting change in communities through participation on boards and in public meetings, emergency & disaster preparedness, personal care attendants, relationships & intimacy, assistive technology, disability laws & myths, ABLE account, and health, fitness & fun. Throughout the pilot, project participants will ultimately guide BVCIL’s topic list. In addition to the fireside chats, BVCIL will also host one-to-one Independent Living Skills trainings and work with participants regarding individual advocacy.
Year 3 Subgrantees:
- Imagine Art -- Imagine Art began as a grassroots organization in 1996 serving artists with disabilities, with a mission to increase their presence in the Austin arts community. In 2016, Imagine Art became a long-term care provider to ensure its community had access to quality attendants, residential settings and specialty support services. As a subgrantee, Imagine Art will create a virtual community of peers who share common challenges and offer participants opportunities for social interaction and support. Participants will gain new insights, while sharing their own challenges and successes of daily living with paralysis. Imagine Art’s peer support program will increase opportunity for support and services for Texans living with intellectual or developmental disabilities and paralysis, especially those living in rural and under-resourced areas of the state. Participants will have easy access to a HIPAA secure platform where they will access a virtual community that brings peers together to share common challenges, success stories and opportunities for shared resources.
- Coastal Bend Center for Independent Living -- Coastal Bend Center for Independent Living (CBCIL) is a local 501-c-3 non-profit organization founded in 1996 in Corpus Christi, TX, and in 2002, was established as a federally designated center for independent living with a federal grant award. CBCIL’s mission is to assist individuals with disabilities meet their goals to live independently. Through the VILS project CBCIL will develop virtual platforms for outreach, education, information, and support to connect individuals with paralysis to CBCIL’s Assistive Technology Demonstration Center, independent living core services, and individual and group peer activities. CBCIL will develop and coordinate a virtual process to introduce assistive technology and independent living services, learning sessions, and peer support opportunities to individuals with paralysis. The purpose of CBCIL*Connect is to provide a digital vehicle to engage and support those living with paralysis to reach their independent living goals.
- Art Spark Texas -- Established in 1996, Art Spark Texas offers inclusive arts programs and services in Austin, and is the only organization operating at the intersection of arts, education, and disability in Texas. Art Spark Texas works to create positive change in the lives of people with disabilities through artistic micro-enterprise opportunities, including exhibitions and artist demonstrations; multi-disciplinary classes, workshops and professional internships; dynamic school and community based artist residencies; and groundbreaking performance in dance, theater, spoken word, and music. The focus of the VILS project will allow participants to be professionally trained to speak and present at conferences and other events. This public speaker training program combines the arts of storytelling and acting with public speaking skills so that self-advocates can bring their stories to the general public. Through workshops focused on narrative storytelling and presentation techniques, participants will work to develop strong, creative voices, as well as the skills necessary to advocate for disability rights. Participants will also receive mentoring and coaching from the Project Coordinator, their peers, and other professionals. Self-advocates will be encouraged to tell their life stories, their abilities, needs, hopes, and dreams. Through telling these stories, they will help to create positive change in public awareness and public policy that affects people with disabilities.
- Volar CIL -- Volar CIL is a nonprofit, community-based organization that was established in 1981 in El Paso, Texas, to assist individuals with physical, mental, cognitive, and sensory disabilities to obtain the information, skills, and resources they need to function as independently as possible in the community. The goals of the VILS project will be to, increase access to independent living services for individuals living with paralysis in the environment they choose. Among the objective of the project are to; expand the availability of services to individuals who are living with paralysis and increase coalitions between community-based organizations that provide supports and services to individuals with paralysis; provide job readiness; identify and educate participants on assistive technology options and resources for people with paralysis; encourage community-based living for people with paralysis who may currently reside in a nursing facility or at risk of institutional placement; and provide diversion services to individuals who may be at risk for institutionalization by identifying and addressing factors that put them at risk.
- North Texas United Spinal Association -- NTUSA provides a web-based hub for individuals with spinal cord injuries (SCI)/paralysis living throughout North Texas. NTUSA will create a partnership network with rehabilitation hospitals, community centers, rural organizations, and consumers across the 30 underserved, rural counties of North Texas to provide a multi-tiered virtual peer mentoring and support program. The VILS project will enable NTUSA to further expand their mission by offering virtual peer mentoring and support to consumers in underserved and rural areas within the 30-county region of North Texas. This expansion will allow NTUSA to deliver via Zoom a multi-tiered approach to peer mentoring that will include virtual “wellness checks”, one on one virtual peer mentoring, virtual meetings featuring guest speakers on varying topics such as health & wellness, medical technology, employment, social growth and a virtual, monthly, all members meeting.