April 2005

If you have a child with CP who needs a wheelchair, we recommend that you answer the following questions before ordering the new equipment:

• Will your child be pushed, self-propelled, or will need a power wheelchair?  
• Will the chair need to be rigid, be able to be folded or will it tilt?  Today you can find chairs that will ‘stand’, too.
• Will your child need maneuverability or will they need stability?
• Where will your child use the chair?
• Will the chair be able to grow as your child grows?
• How will your child get in and out of the wheelchair?
• What type of stroller handles will your child need?
• What type of leg rests will your child need?
• What type of seat will your child need?
• What type of footrests or footplates will your child need?
• What type of armrests will your child need?
• Does the wheelchair need fixed or adjustable axle plates?
• What kind of warranties does the manufacturer give?  Wheelchairs need to be serviced on a regular basis.
• What restrictions does your insurance company have concerning paying for wheelchairs?
• How will you transport the wheelchair?
• Will your home owner’s insurance cover the wheelchair?

A few links that helps you look up information on different types of wheelchairs:

http://www.abledata.com
http://www.allegromedical.com

Source:  Richardson Enterprises

March 2005

If you are caring for a child with Cerebral Palsy, you may find that special children’s books can help you to explain your loved one’s condition to peers and friends in schools.  We have found a list of CP-related book annotations at the following website: http://uscm.med.sc.edu/CDR/index.htm.  Some of the books that they recommend to explore are listed below.

Children’s books

All by self: A father's story about a differently-abled child. Ron Taylor. Boulder, CO: Light On Publications, 1991.Call number: Disabilities-FAM PR 990 T245a 1991.  Call number: Disabilities-FAM PR 990 T245a 1991

• A father’s story about his son with cerebral palsy, which is told in a poetic style.

Danny and the merry-go-round. Nan Holcomb. Exton, Pa.: Jason and Nordic, 1987.Call number: Disabilities-FAM PR 990 H725d 1987

• Danny makes a new friend, Liz, at the park.

Howie helps himself. Joan Fassler. Morton Grove, IL: Albert Whitman & Co., 1975.Call number: Disabilities-FAM PR 990 F249h 1975

• Howie, a child with cerebral palsy, wants to learn to use his wheelchair (Ages 4 to 8).

I'm Joshua and "yes I can". Joan Lenett Whinston. NewYork: Vantage Press, 1989.Call number: Disabilities-FAM PR 990 W572i 1989

• A day in the life of Joshua, a boy with cerebral palsy.

It's your turn at bat: Featuring Mark Riley. Barbara Aiello and Jeffrey Shulman. Frederick, Md.: Twenty-first Century Books, 1988. The Kids on the Block book series. Call number: Disabilities-FAM PR 990 A288i 1988

• A story about Mark, a fifth-grader with cerebral palsy. A question and answer section about cerebral palsy is included.

Taking cerebral palsy to school. Mary Elizabeth Anderson.1st ed. Valley Park, MO: JayJo Books, 2000.Call number: Disabilities-FAM PR 990 A548t 2000

• Chad, a boy with cerebral palsy, describes what his life is like to his classmates and teacher. (Ages 5-10).

February 2005

If your child has Cerebral Palsy and s/he would like something that your family cannot afford, you may be able to receive a one time help from one of the wish granting organizations.

We have visited the websites of the Sunshine Foundation and the Make-a-Wish Foundation.  Here is what we have found:

		Sunshine Foundation	Make-A-Wish Foundation
Eligibility	Age	Child must be between the ages of 3 and 18.	Children must be over the age of 2½, and under the age of 18.
	Illness	The child must be seriously ill, physically challenged or abused.	Children with life-threatening medical conditions; condition does not have to be terminal.
	Family Income	Families with incomes at or above $75,000 a year cannot be considered.	Family income is not a consideration in determining whether a child is eligible to receive a wish.
	Previous Wish	Sunshine does not fulfill requests for children who have had a previous dream granted by any organization.	The child cannot have received a wish from another wish-granting organization.
Wish Process		1.  Complete the ‘Refer a child’ page online. 2.  Complete the application form. 3.  Board of Directors approves	1.  Refer a child. 2.  Physician determines medical eligibility. 3.  Volunteer wish team visits the child and asks about the wish. 4.  Chapter approves the wish
Waiting time		One to three months application review. One year after approval (terminally ill children are considered ASAP).	No Info Online.

Contact information for Sunshine Foundation:

Sunshine Foundation - Corporate Office

1041 Mill Creek Drive
Feasterville, PA 19053
215-396-4770
Fax: 215-396-4774
philly@sunshinefoundation.org
www.sunshinefoundation.org

Contact information for Make-A-Wish Foundation:

Make-A-Wish Foundation of America
3550 North Central Avenue, Suite 300
Phoenix, Arizona 85012-2127
Monday – Friday, 6:00 a.m. – 6:00 p.m. Arizona Time
Phone: (602) 279-WISH (9474)
Toll free: (800) 722-WISH (9474)
FAX: (602) 279-0855
www.wish.org

Both Foundations are open to receive your tax-deductible donation.



January 2005

If you have difficulty dressing and undressing your child when s/he is in a cast after a lower limb or hip surgery, break-away pants may be the best solution.  Break-away pants also listed as breakaway or tear-away pants, usually made and sold to sport teams and carried in sport specialty stores.

These pants (short and long versions) snap off and on down the sides.  Some makers use Velcro to reach similar results.

Guidelines to make break-away pants on your own:

1. When you select the pants, make sure that you remember, you will loose approximately three inches in the waist and leg diameter area for cutting, folding and installing the snaps.
2. Prewash the pants.
3. Mark where the snaps will go.
4. Cut the fabric.
5. Press the folds.  Do not slide the iron on the fabric because that may stretch the material causing asymmetrical fronts and backs.
6. Install the snaps in a way that the front parts of the pants snap onto the back parts of the pants.

December 2004

If your child has Cerebral Palsy, s/he may need long-term services or care.  As a parent, you have to be prepared to cover the expenses of different services and care solutions.  According to the Centers for Disease Control and Prevention the average lifetime cost for one person with Cerebral Palsy is estimated to be $921,000 (in 2003 dollars).  This represents costs over and above those experienced by a person who does not have a disability.

To ensure the financial resources for the expected expenses, you may consider the following:

• Consult with a Lifecare Planner who is able to prepare a future cost assessment report for you.
• Request a copy of all medical reports that you feel may be important to have in the future.
• Consult about available and applicable insurance options.
• Learn about governmental benefits.
• Request a free consultation with an attorney who can review your case and may advise you to take legal actions against your doctor or hospital in order to receive structured or lump sum settlements.
  

Cost estimate reference is from: Centers for Disease Control and Prevention. Economic costs associated with mental retardation, cerebral palsy, hearing loss, and vision impairment --- United States, 2003. MMWR 2004;53:57-9.


November 2004

If your child with CP needs short- or long-term hospital care, or your child recently suffered a traumatic brain injury, you may find the following unique service helpful: the “Family Advocate” owned and operated by Michael Kennedy RN, BSN, LNC.

A "Family Advocate" in the employ of the family can explain tests and procedures to you, answer questions, and discuss treatment options with you and the staff at the hospital or rehabilitation center.

The “Family Advocate” helps the family feel better informed and more in control of a complicated situation.  This service also improves communication between the hospital and the family.

To learn more about the “Family Advocate” visit www.thefamilyadvocate.com or call 1-513-891-5088.


October 2004

If you have to remodel your home in order to make it accessible for a family member with a motor disability, we came across a few great websites that will give you ideas as well as solutions.

We have found the following websites worthwhile to explore:

http://www.softbathtubs.com	Offers soft, safe, comfortable, durable and energy efficient tubs.
http://www.bruno.com	Offers straight and custom-curved stair lifts.
http://www.handi-lift.com	Offers stair chairlifts, wheelchair lifts and elevators in residential settings.
http://www.accessabledesigns.com	Offers bathroom solutions.

September 2004

If you or your child need a wheelchair, but your insurance denied paying for it, you may be qualified to receive one for free from a non-profit organization, called Alternatives in Motion.

Alternatives in Motion was established by Johnnie Tuitel (who has Cerebral Palsy) and George Ranville in 1995.

Their mission is to provide wheelchairs to people who need them but cannot afford them, and who do not qualify for any other financial assistance.

The purpose of their mission is to help individuals improve and maintain their dignity and quality of life through mobility assistance.

To inquire about this opportunity, volunteer, or donate for this organization access their website at www.alternativesinmotion.org or call 616.493.2620 (local) or toll free at 877.468.9335.

Johnnie Tuitel is also a motivational speaker giving inspirational presentations nationwide to sports teams, schools and universities, charitable organizations and businesses.  For more information please visit: www.tapshoe.com.

Also, check out their books: Gun Lake Adventure Series that teaches kids (and adults) about various disabilities—but it does so through adventure stories that appeal mainly to kids 8-10 years of age. The hero of the book (Johnnie Jacobson) has Cerebral Palsy and relies on a wheelchair for mobility.