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Pediatric Spinal Cord Injury & Disease

Pediatric SCI resources, facilities, publications and special concerns....

1. Pediatric Spinal Cord Injury Care Facilities

1.1. 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.

1.2. 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. 

Kennedy Krieger Children's Hospital, Inc. (KKI)

707 North Broadway
Baltimore, MD 21205
US
Phone: 443-923-9200
Website: http://www.kennedykrieger.org


Madonna Rehabilitation Hospital

5401 South Street

Lincoln, NE 68506

Telephone: 402-489-7102

 

Children's Day Rehab Program

993 F Johnson Ferry Road
1st Floor
Atlanta, GA 30342
US
Phone: 404-785-1300
Website:

   
     
Children's at Scottish Rite 
1001 Johnson Ferry Road NE
Atlanta, GA 30342
404-785-5252
   

Aylesbury, England

National Spinal Injuries Centre

Stoke Mandeville Hospital
Mandeville Road
Aylesbury HP21 8AL
ENGLAND
Phone: 011-44-1296-316307

 

1.3. 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

305‑585‑7112

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

507‑255‑5920

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

908‑301‑5561

Three-year Accreditation   Exp. 6/30/2011

Spinal Cord System of Care (Pediatric Family Centered)

 

 

1.4. 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.

Located in Philadelphia, Pa in Chicago, IL and in Sacramento, CA

2. Pediatric Spinal Cord Injury Facts

2.1. 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.

 

2.2. 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.

 

 

 

2.3. 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.

 

2.4. 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.

3. Pediatric Books and Videos

3.1. Books for children and adults (1)

For an extensive list of resources and appropriate book titles, please open the downloadable link on this page.

3.2. Pediatric SCI/D related videos (see Video Resource Room)

SEE related page below

4. Funding Sources

4.1. 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  
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.
http://challengedamerica.com/
(818) 907-6966

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.
http://disabled-child.org/
240-929-4281 

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. 
https://www.firsthandfoundation.org
(816) 201-1569

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).
http://www.givingangelsfoundation.org/
267-332-1320

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.
http://hboinfo.com/hhi/gracies-hope/
(704)-875-7189

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.
http://www.adaptivemall.com/kiddiepool1.html
800.371.2778

Kiddos' Clubhouse Foundation 
Kiddos' Clubhouse Foundation provides therapy scholarships to help families pay for critical therapies.
http://kiddosclubhousefoundation.org/
678-527-3224 

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.
http://maggiewelby.org/
314-330-6947

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.
http://parkerspurpose.net/index.php?page=application-for-assistance
(419) 334-7275

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.
http://www.prayerchild.org/
480-634-6086

Sunshine Foundation 
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.
http://www.sunshinefoundation.org/
(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.
http://www.uhccf.org/
855-698-4223

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.
http://usvariety.org/
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.
http://www.wheeltowalk.com/
(503) 257-1401 

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. 
http://wheelchairs4kids.org/
727-946-0963 

 

 

 

5. Misc Pediatric resources

5.1. Adolescent Health Transition Project

Adolescent Health Transition Project a resource for teens and young adults with special health care needs.

5.2. Babies with iPads

This blog is designed to document infants/toddlers with disabilities using an iPad to promote their development. I hope to show how this new technology can help children with disabilities develop their communication, play, pre-literacy, cognitive, visual/auditory and motor skills.

Babies with iPads Grant Application Eligibility Requirements

 

Babies with iPads will be granting an iPad  to deserving children as often as funds allow.  I will personally screen all applications to determine if eligiblity requirements are met,  then a team consisting of at least a parent, ST, and OT will review the applications without identifying information and choose the top 3 deserving children.  Of the top 3 children one will be randomly choosen and mailed a refurbished or new iPad.

Eligiblity Requirements:

1.  Reside in US
2.  Child between the ages of 6 months and 8 years old.
3.  Child must have multiple medical and/or developmental issues (physical and/or cognitive impairments) that impact his or her ability to play and communicate.
4.  Access to a computer with an iTunes account
5.  Currently cannot afford to purchase an iPad (no income verification required)
6.  Ability to provide pictures, videos and/or updates to Babies with iPad to use as needed.

5.3. 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.


5.4. 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.

5.5. 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.