Pediatric Spinal Cord Injury & Disease
- 1. Children's resources for PB
- 2. Pediatric Spinal Cord Injury Care Facilities
- 2.1. Detail of CARF programs
- 2.2. CARF Accredited Pediatric Rehab Programs (in-patient/out-patient)
- 2.3. CARF Accredited Pediatric (family centered programs)
- 2.4. Saint Mary's Kids-NewYork
- 2.5. Shepherd Center (Atlanta) adolesent rehab-12-21 years
- 2.6. Shriners Hospitals for spinal cord injury rehabilitation
- 3. Pediatric Spinal Cord Injury Facts
- 4. Pediatric Books and Videos
- 5. Funding Sources
- 6. Misc Pediatric resources
1. Children's resources for PB
2. Pediatric Spinal Cord Injury Care Facilities
2.1. Detail of CARF programs
Spinal Cord System of Care
A Spinal Cord System of Care provides coordinated, case-managed, integrated services for persons with spinal cord dysfunction, whether due to trauma or disease. This system includes at a minimum an inpatient component in an organization licensed as a hospital and an outpatient component. The inpatient component of the Spinal Cord System of Care coordinates and integrates medical and rehabilitation services that are provided 24 hours a day, 7 days a week. The outpatient component of the Spinal Cord System of Care provides a structured, coordinated, comprehensive nonresidential program. The persons served participate on a scheduled basis that is less than 24 hours a day, 7 days a week. The system of care might also include a Home- and Community-Based Rehabilitation Program, Residential Rehabilitation Program, and/or Vocational Services.
Striving to achieve the most integrated setting for the person served, each component of the Spinal Cord System of Care endorses the active participation and choice of the persons served throughout the entire program.
There is documented evidence that the Spinal Cord System of Care maintains the necessary expertise and capacity to provide services in all components of the continuum it offers. The Spinal Cord System of Care provides or formally links with key components of care that address the life-long needs of the persons served. These key components of care include, but are not limited to, emergent care, acute hospitalization, other inpatient rehabilitation programs, skilled nursing care, home care, other outpatient medical rehabilitation programs, community-based services, residential services, vocational services, primary care, specialty consultants, and long-term care.
The Spinal Cord System of Care is accountable for and serves as a resource to the persons served, their families/support systems, and continuum-of-care providers through its:
Identification of care options and linkages with services/programs with demonstrated competencies in spinal cord dysfunction.
Achievement of predicted outcomes.
Conservation of funding to meet life-long needs.
Provision and facilitation of medical interventions.
Facilitation of opportunities for interaction with individuals with similar activity limitations.
Focus on life-long follow-up that addresses impairment, activity, participation, and quality of life.
Provision of education and training.
Identification of regulatory, legislative, and financial implications.
Participation in research and application of research to clinical practice.
The Spinal Cord System of Care is responsible for developing, facilitating, and ensuring demonstration of competencies that address the unique needs of the persons served. These competencies are established for the persons served, their families/support systems, and personnel.
The Spinal Cord System of Care encompasses care that advocates for full inclusion and enhances the lives of the persons served within their families/support systems, communities, and life roles.
Information about the outcomes achieved is shared with relevant stakeholders.
In addition to the inpatient and outpatient components, an organization seeking accreditation for its Spinal Cord System of Care must include in the Intent to Survey and the site survey all portions of the continuum (Home and Community Services, Residential Rehabilitation Program, and Vocational Services) that the organization provides and that meet the program descriptions.
Note: Spinal cord dysfunction could be caused by trauma, cancer involving the spinal cord, inflammatory conditions such as multiple sclerosis, and non-traumatic etiologies such as tumors.
2.2. CARF Accredited Pediatric Rehab Programs (in-patient/out-patient)
A CARF-accredited spinal cord system of care (SCSC) includes an inpatient rehabilitation program provided in a hospital and an outpatient rehabilitation program. It may also provide services in the community, a residential program where people live, and/or services that focus on work. All services are specialized for people with a spinal cord injury or disease.
Children's Healthcare of Atlanta at Scottish Rite (CHOA)
1001 Johnson Ferry Road NE
Atlanta, GA 30342
Children's Day Rehab Program
993 F Johnson Ferry Road
Atlanta, GA 30342
Kennedy Krieger Children's Hospital Spinal Cord Outpatient Center at Maple Lawn
11830 West Market Place
Fulton, MD 20759
Kennedy Krieger Children's Hospital, 801 Outpatient Center
801 North Broadway
Baltimore, MD 21205
Madonna Rehabilitation Hospital
5401 South Street
Lincoln, NE 68506
2.3. CARF Accredited Pediatric (family centered programs)
A Spinal Cord System of Care (SCSC) that focus on services for children or adolescents is called a Pediatric Specialty Program. Family-centered care is the essence of these programs. Members of the families/support systems of the children participate in all aspects of the program and decisions made about the care of their children.
Jackson Memorial Hospital Rehabilitation Center at Jackson Health System
1611 Northwest 12th Avenue, Rehabilitation Building, Suite 310
Miami, FL 33136
Three-year Accreditation Exp. 12/31/2010
Spinal Cord System of Care (Pediatric Family Centered)
Mayo Clinic Rehabilitation Unit
1216 Second Street SW
Rochester, MN 55902
Three-year Accreditation Exp. 2/28/2010
Spinal Cord System of Care (Pediatric Family Centered)
PSE&G Children's Specialized Hospital
200 Somerset Street
New Brunswick, NJ 08901
Three-year Accreditation Exp. 6/30/2011
Spinal Cord System of Care (Pediatric Family Centered)
2.4. Saint Mary's Kids-NewYork
The mission of St. Mary’s Healthcare System for Children’s Locomotor Training Program
is to improve function and reduce limitations of children with paralysis by promoting
mobility and age appropriate activities to enhance the quality of life for the child
and their family.
What is Locomotor Training?
Locomotor Training (LT) is an intensive individualized therapy program that improves
function in persons with spinal cord injury (SCI) and other neurological diagnoses.
The interventions in this program focus on sending appropriate input to the nervous
system in a systematic way so that it can learn tasks such as sitting upright, standing,
and walking. This training includes three primary components; step training in a body
weight supported treadmill system, overground assessment and community integration activities.
Goals of Locomotor
Based on our current understanding of current research of how the brain and spinal cord
learn a new skill and how stepping is controlled, patients may be able to make gains in
trunk control, functional mobility, and/or independent ambulation. Studies are currently
underway to learn the effects of LT on overall quality of life; however results from studies
in adults have shown it has strong impact on cardiovascular, respiratory and musculoskeletal
Therapists and other clinicians who are trained in Locomotor Training develop an individualized
treatment plan for each child. LT includes 90 minute session for five days a week for a minimum
of 60 sessions. Each session includes 60 minutes in a body weight supported system over a treadmill,
and 30 minutes of functional activities off of the treadmill.
Who is a Candidate?
A child who meets the following criteria:
•Has a diagnosis of Spinal Cord Injury (SCI) through traumatic injury and/or infarct, Acute Flaccid
Myelitis (AFM) or Guillain-Barré Syndrome.
•Aged 18 or younger
•Has not had tendon lengthenings or Botulinum Toxin injections within the past six months
•Can tolerate supported standing for an hour
•Is deemed medically stable by the interdisciplinary team
How Do I Get Started?
•Fill out the form below, which will be sent directly to our team
•You can also call Sonali Loboda, Project Coordinator at 718-281-8987
•Within five business days, a member of our team will reach out to you to complete a phone screening
What is the Admissions Process?
•Our admissions team will review the below in order to deem candidacy into the program:•All medical records
•Current program capacity and wait-list
If My Child is Admitted, What Should I Expect?
•A full two day evaluation is completed of each patient that is admitted into the program which involves
items both on and off of the treadmill
•The Locomotor Training Program is an intensive therapy program, and therefore will challenge your child.
They will be monitored closely and given breaks as needed, but the team’s aim is to make each and every
session as productive as possible.
•We ask that a parent or guardian stays with their child throughout the 90 minute session, five days per week
2.5. Shepherd Center (Atlanta) adolesent rehab-12-21 years
Spinal Cord Injury Rehabilitation Programs for Young Patients Age 12 and Older
It’s hard enough being a teenager. But what about being a teen who has to cope with the effects of a life-altering accident or illness? At Shepherd Center, medical treatment focuses on returning adolescents with spinal cord injuries to the highest possible level of functioning and independence. Watch the video to learn more about adolescent spinal cord injury rehabilitation at Shepherd Center.
Each year, more than 100 adolescents, ages 12 to 21, come to Shepherd Center for spinal cord injury rehabilitation from all over the country. They or their families choose Shepherd for its specialized treatment teams, age-appropriate therapy, and expertise in treating teens and young adults with spinal cord injuries.
The Adolescent Spinal Cord Rehabilitation Program follows Shepherd Center's goal of returning patients to the highest possible level of functioning and independence, while addressing adolescents' needs for autonomy, privacy and control.
Hallmarks of the adolescent spinal cord injury rehabilitation program include:
- A physician-led treatment team dedicated to adolescent patients
- Individual rehabilitation sessions in the same therapy gym as other teens
- Teens-only support groups and visits from former teen patients
- Education and training in problem-solving, stigma management, self-advocacy, drug and alcohol awareness, self-care and sexuality
- Community outings, which include going to restaurants, shopping malls, sports arenas and even camping, to promote problem-solving and the experience of being out in the community in a supportive group
- An on-staff teacher who keeps patients up to date on schoolwork
- An innovative, school-reintegration program that helps lessen anxiety for teachers, classmates and the newly injured adolescent
- A high priority on the involvement of family and friends
- Adaptive video gaming program
Adolescent Spinal Cord Rehabilitation and Academics
Staying on track academically is extremely important for teens with a spinal cord or brain injury. More than 90% of our spinal cord-injured adolescent patients return to school within two weeks of discharge. Of those, 95% graduate on time with their class and with their pre-injury GPA. For adolescents and teens with a brain injury, 95% return to school within three to six months.
Many families wonder how rehabilitation for teens may affect their schooling. Adolescents rely on school experiences and positive peer interactions for much of their self-esteem and growth. Shepherd Center has developed a program called No Obstacles for teens with spinal cord injuries to facilitate the back-to-school transition.
Designed in part by the individual patient, the program can include in-school awareness and sensitivity training for school staff and students, as well as instruction in medical issues that may arise during the school day. Support from our donors makes this program available to most teen patients at no cost.
Patient Stories of Hope
Patients in the Adolescent Spinal Cord Injury Program share their stories and speak about their experiences with Shepherd Center. Watch the videos to hear how three adolescents achieved their best outcomes in our spinal cord injury rehabilitation program for teens.
2.6. Shriners Hospitals for spinal cord injury rehabilitation
Shriners Hospitals for SCI rehabilitation provide dedicated SCI inpatient rehabilitation care for children and youth through age 21.
Three Shriners Hospitals provide SCI rehabilitation.
3. Pediatric Spinal Cord Injury Facts
3.1. Pediatric Spinal Cord Injury General Information
The attached provides an explanation about the way a spinal cord injury affects a child, important considerations during acute rehabilitation, goals of rehabilitation, the importance of a medical team approach to the management of post injury health care and how this injury will affect a child's growth and development.
3.2. Living With and Caring For Your Child
This section discusses parenting challenges, establishing goals for your child and his/her care; offers tips for talking with other children/siblings in the family and how these children can be important participants in this family journey.
3.3. Practical Tips and Helpful Caregiver Resources
This section includes specific suggestion for managing the care of your child, strategies for organizing family needs and ideas for achieving and maintaining your health as a parent.
3.4. Pediatric Resources (print version)
This section provides an extensive list of organizations and varied resources that may be useful to you and your family. It includes a section about resources in Spanish (En Espanol).
The print version includes all web addresses in URL format for printing and sending a hard copy.
4. Pediatric Books and Videos
4.1. Books for children and adults (1)
For an extensive list of resources and appropriate book titles, please open the downloadable document on this page below.
4.2. Pediatric SCI/D related videos (see Video Resource Room)
SEE related page below
5. Funding Sources
5.1. Funding & Grants For Children With Disabilities
There are a number of organizations that may provide funding for children with disabilities. They cover a wide array of funding purposes such as therapy, equipment, accessibility, medications, recreational opportunities, and many other items and services. These organizations have certain grant/funding criteria so please be sure to check their websites (or phone them) for funding details.
Challenged America offers funding to disadvantaged, physically or developmentally challenged children (or their parents). You can submit requests for medical attention, rehabilitative therapy, and/or assistive devices they would otherwise be unable to obtain. The benefits to the children go far beyond the physical. Assistance from Challenged America can improve their quality of life, help them gain confidence and self-esteem, and ease their reentry into the community.
Disabled Children's Fund
Disabled Children's Fund (DCF) is a humanitarian organization committed to serving the indigent and oppressed children and their families worldwide. Disabled Children's Fund provides about two million dollars worth of humanitarian services annually at no charge for children and adults and provides braces, wheelchairs, crutches, walkers, and rehabilitative services globally.
The First Hand Foundation
The First Hand Foundation is a public 501(c)(3) organization that provides funding for individual children both domestically and globally who need assistance with clinical necessities (such as surgery, medication and therapy), medical equipment and travel related to care. They provide both domestic and global funding.
Giving Angels Foundation
The mission of the Foundation is to assist special needs children with a physical disability or illness aged 21 or younger throughout the United States. The Foundation awards grants to lower income families to enhance the everyday life of the child. Funds are awarded on a case by case basis. Families who wish to receive assistance must complete an application and demonstrate financial need. Applications are accepted throughout the year. Grants are only to be awarded once per child (for clarification, families who have multiple children who qualify are eligible to be awarded once per child).
Gracie's Hope Inc.
A non-profit organization committed to help improve the lives of children with special needs. They help provide funding for therapies such as, but not limited to, PT, OT, Speech, Chelation, and Hyperbaric Oxygen Therapy. They also help provide needed equipment and assist families in finding respite care, and other needed services.
The Kiddie Pool
The Kiddie Pool program is an online fundraiser. Your family joins the program and a custom webpage is created for your child with special needs. Included on the webpage is a photograph of your child, your child's story, products desired for your child and fun facts about your child. This webpage is designed to be shared with friends and family through an email campaign. Once friends and family members visit your child's webpage, they can read about your child and learn about the products he/she needs. They can then make a donation for your child that will be put into an account on Adaptivemall.com. You will receive an email each time someone has donated to your child's fund so that you can keep track of where you are with your goal. Once your child has received enough donations, you can redeem them for the products desired.
Kiddos' Clubhouse Foundation
Kiddos' Clubhouse Foundation provides therapy scholarships to help families pay for critical therapies.
Maggie Welby Foundation
Offers grants for children and families that have a financial need for a particular purpose. Grants may extend to children and families in need of help with bills, athletic opportunities, medical needs, or an opportunity that a child would not otherwise have. All grants are awarded to the family, but are paid directly to the specific purpose for which the grant was applied.
Parker's Purpose Foundation Assistance
Parker's Purpose Foundation Assistance offers funding/grants to any family who has a minor (18 and under) with a life altering illness or disability that is in an immediate financial crisis due to unforeseen medical expenses. Families who live in Ohio will be first priority in providing assistance but will extend outside the state if deemed necessary.
Prayer Child Foundation
The Foundation seeks to provide assistance to living children that are eighteen years old and younger with physical and emotional challenges. The Foundation provides support to national children's charities, individuals and organizations located within supporters' local communities.
Sunshine Foundation answers the dreams of chronically ill, seriously ill, physically challenged and abused children, ages three to eighteen, whose families cannot fulfill their requests due to the financial strain that child's illness may cause.
(215) 396 4770
UnitedHealthcare Children's Foundation
UnitedHealthcare Children's Foundation is a 501(c)(3) non-profit charity dedicated to facilitating access to medical-related services that have the potential to significantly enhance either the clinical condition or the quality of life of the child and that are not fully covered by the available commercial health benefit plan. This "support" is in the form of a medical grant to be used for medical services not covered or not completely covered by commercial health benefit plans.
Variety the Children's Charity
Variety's Freedom Program delivers vital life-changing equipment and services for mobility, independence and social inclusion to individual children and children's organizations. Together through the Freedom program, we change children's lives by granting items and services that provide independence, mobility and freedom. Grants under the Freedom program are made to individual children and children's organizations.
323 954 0820
Wheel to Walk Foundation
A non-profit organization that helps children and young adults (20 years and younger) with disabilities obtain medical equipment or services that is not provided by their insurance companies. We purchase items such as therapy tricycles, adaptive strollers, shower chairs, pumper cars, zip zac chairs, selective communication devices, gait trainers, speech therapy and wheelchairs, to name a few. Our organization strongly believes that no child or young adult with special needs go without items that could improve the quality of his or her daily life. If you live in Oregon, Washington, Idaho or California and need assistance with anything from leg braces, bath chairs, gait trainers to therapy tricycles and wheelchairs, please contact us.
Wheelchairs 4 Kids
Although our name may be Wheelchairs 4 Kids, our plan involves so much more than providing wheelchairs for America's disabled children. Our goal is to give every child with mobility challenges the best opportunity to live life at its' fullest. Wheelchairs 4 Kids will help them by providing not only well fitted, well equipped wheelchairs, but also assist with ramps, wheelchair lifts, home modifications and hopefully in the future, playgrounds.
5.2. Special needs trust --ABLE planning
A financial guide: Helping your child with a disability become a financially secure adult
Preparing your child for a secure financial future as an adult with a disability
If you have a child with a disability, you’ve probably asked yourself how to ensure that your child has the best life possible – not only now, but after they transition into adulthood. This means setting up tools, trusts and resources that can provide your child with long-term financial security, even if they are unable to earn a living on their own.
It also means preparing for what might happen after you are no longer there to help:
“I am the single mother of a 27-year-old intellectually disabled daughter, and this topic is the focus of my life right now,” says Sarah Farmer, a writer and marketing team member at Advocates for Human Potential. “I have spent a decade ensuring she is financially able to survive once I pass away, including getting Supplemental Security Income (SSI), guardianship, SNAP, Section 8 housing, supported living staff, a day program, connection with workforce services, whole life insurance and a special needs trust.”
Those with disabilities range widely in their abilities and preferences, and disabilities can include physical or mental impairments that substantially limit major areas of life. Helping your child with a disability transition into a financially secure adulthood might not be easy – but it’ll be worth it.
6. Misc Pediatric resources
6.1. BACKBONES Youth Summer Program
The BACKBONES Youth Summer Program is for teenagers (ages 15-18) with spinal cord injuries and disease (SCI/D) to build self-advocacy skills and learn about topics important to youth with disabilities. Some topics include Going to College, Storytelling & Social Media, Employment, Recreation & Travel, Dating, and many more! This is a new virtual program in 2022 that meets weekly from June through August. It is a fun opportunity to connect with others with SCI/D and learn directly from leaders and professionals in the disability community. Applications for participation are due by March 30, 2022. Please visit the following link to learn more: Youth Summer Program - BACKBONES (backbonesonline.com).
6.2. Parents of SCI Facebook group
Request to join the group here: https://www.facebook.com/groups/134835720420052
6.3. Adolescent Health Transition Project
Adolescent Health Transition Project a resource for teens and young adults with special health care needs.
6.4. 4 Paws for Ability
4 Paws for Ability
Phone: (937) 374-0385
4 Paws for Ability is a nonprofit, 501(c)(3) organization whose mission is to place quality service dogs with children with disabilities and veterans who have lost use of limbs or hearing; help with animal rescue, and educate the public regarding use of service dogs in public places.
6.5. Parents Helping Parents
PHP increases the quality of life for our most vulnerable by providing services, resources and support for children with special needs, their families, and caregivers. Call 408-727-5775.
Established in 1976 as a nonprofit agency, Parents Helping Parents, meets the needs of one of our community's most vulnerable populations - individuals with any special need and their families. This includes children of all ages and all backgrounds who have a need for special services due to any special need, including but not limited to illness, cancer, accidents, birth defects, neurological conditions, premature birth, learning or physical disabilities, mental health issues, and attention deficit (hyperactivity) disorder, to name a few.
6.6. Interactive Planner for Caregivers
Interactive Planner for Caregivers
This free online resource allows caregiver's to effectively log their child's daily activities. From scheduling their day, logging meals, recording game and activities, and uploading emergency contacts; parents and caregivers can have a piece of mind for their child.