Cerebral Palsy Law Blog : Cerebral Palsy Lawyer & Attorney : Burke & Eisner Law Firm : Medical Malpractice Lawyers & Attorneys

Charter schools throughout the Denver area are currently being scrutinized for the way they cater (or don't) to children with disabilities like cerebral palsy. In many other charter schools throughout the country, Cal Crum, 8, wouldn't be permitted to sit in a normal second-grade classroom setting, to lear about geometric shapes with peers developing at a faster pace than he is.
 
Cal, who is currently a student at Odyssey Charter School, was born with cerebral palsy. Cerebral palsy is one amongst many severe disabilities that most charter schools claim require an ability and funding they don't have. Therefore, not only do many charter schools not cater to the special needs of children like Cal, but many don't even accept students with his condition.
 
Children with Cerebral Palsy Face Inequality

Cal is reportedly one of only two children living with a severe mental and physical disability among Denver Public Schools' 7,000 charter-school students, says a task force of officials from charters and DPS. Both of which are currently focused on changing this outrageous dynamic that exists within the district's autonomous schools.

"The current state of affairs is not acceptable," says Superintendent Tom Boasberg said. "We've been very strong and clear that all of our schools must offer equality of opportunity for all of our students, including any and all of our students with disabilities."

Each year the city of Denver opens more charter schools. District officials are working to change policies to ensure that all students, even those with disabilities area allowed access to charter schools.

"We need policies to ensure that equity," stated Boasberg.

According to reports, students with disabilities that are classified as "mild" or even "moderate" are typically encouraged to receive their education at center-based programs in district schools that can give them the support and care they need. These center-based schools have been specifically created to specialize in helping children with disabilities like cerebral palsy. However, no charter school in Denver has one of these center-based programs. But Boasberg and other district officials assure the parents of children like Cal, that policies already being changed to accommodate children with disabilities at all schools.

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From June 23rd through the 27th in New Orleans, RESNA (the Rehabilitation Engineering and Assistive Technology Society of North America) will be holding its annual conference. The conference is open to anyone interested in issues related to assistive technology (AT) and disability, and it’s a great opportunity for parents of cerebral palsy children to learn more about the latest advances in this field.
 

Assistive technology is aimed at improving the lives and potential of people with disabilities, and RESNA’s mission is to promote research, development and education to this end.  The society’s annual conference features workshops, instructional courses, product demonstrations and much more.
 

Learn more about the event by visiting the RESNA website.

 

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Exceptional Parent (EP) magazine is a great resource for parents of children with cerebral palsy or other special needs, and it’s even better now that it’s gone digital. The first issue is complimentary and is now available online.

Though a limited number of hardcopy magazines will still be printed, the online version features some special benefits including:

• Streaming audio/video
• Virtual page-turning, so it’s like flipping through a hardcopy magazine
• Bookmarking capabilities
• High quality images with zoom function
• No download wait times
• Keyword search
• User interface customization
• Earth friendly

The inaugural issue contains articles sports, disability living, travel and much more. Check it out at  www.eparentdigital.com.



 

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Sometimes one of the greatest challenges of caring for a special needs child is finding the right team of medical professionals. However, there are a number of resources available to help parents of cerebral palsy children find the right doctors for their special needs.
 

The American Academy for Cerebral Palsy and Developmental Medicine is one such resource. The group’s website is primarily dedicated to providing information to healthcare providers in the area of childhood-onset disabilities such as cerebral palsy. But it has recently added a new section to its website for patients and families. This section provides several features, including a listing of family events and websites of interest. It also provides a directory of medical professionals, so parents and patients can look up physicians according to specialty – for instance, pediatric neurology or developmental pediatrics.
 

Read more about what is cerebral palsy or visit the AACPDM website.

 

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Last month, the U.S. Secretary of Health and Human Services wrote a Letter to the Editor entitled “Taking Care of Our Caregivers.” The letter appeared in the Washington Post and addressed the current challenge facing the caregiving community and those they serve. 

 
Long-term care, which is often necessary for children with more severe cases of cerebral palsy, can be extremely expensive. In fact, the lifetime cost of care can exceed $1 million. However, the expenses of long-term care are not easily covered and this puts a serious financial strain on many families.

In addition, long-term caregivers are often overworked and turnover tends to be high. As the Secretary states in her letter, it’s necessary to make changes in the system that will make long-term care a more attractive career choice.

It’s natural for parents to want the best care possible for their child, but it’s no secret that healthcare changes are needed to ensure that all individuals with long-term care needs receive the high-quality care they deserve.

United Cerebral Palsy is one of several organizations advocating for the inclusion of long-term care and support services in healthcare reform. Visit the UCP website to find out what you can do to help.

 

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All children need and deserve to play, but this is not always easy for the special needs child. Children with cerebral palsy and similar disabilities often feel like outsiders, watching other kids play but not being able to participate themselves. However, a new park seeks to change this dynamic.

Opening in the fall of 2009, Morgan’s Wonderland in San Antonio, Texas will cater to special needs kids, their families and their caretakers. The park is a whopping 21 acres in size and features fully accessible restrooms, playgrounds, train rides, a gymnasium, a sensory village, picnic areas, a music garden and more!

In addition, the park is equipped with a controlled entry and exit for security and visitors receive special tracking wristbands for added safety. And the best part about Morgan’s Wonderland – admission is FREE for special needs kids and adults, as well as their family and friends!




 

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Just days after announcing the closing of a therapeutic horse riding program at the University of New Hampshire that serves children affected by cerebral palsy and other disabilities, the dean of the school’s College of Life Sciences and Agriculture said the program would remain open pending further review.

The announcement that the self-funded program would be closed came as an upset to many parents, students and children. Money for the 20-year-old program is raised through fees and fundraising, and a review is being conducted to assess its financial future. The review will be submitted to the dean by July 1st, after which time a more definitive decision regarding the program will be made.

Therapeutic horse riding, also known as hippotherapy, has been shown to improve muscle tone, motor development, coordination and posture in cerebral palsy children. To learn more about hippotherapy, visit the American Hippotherapy Association website.


 

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Food and Drug Administration officials are warning about potentially fatal side effects associated with the use of Botox for treating muscle spasticity, particularly in children with this cerebral palsy symptom. Children with spastic cerebral palsy are sometimes treated with Botox, though the drug is not approved in the U.S. for this use.

The FDA said in a statement that some children given Botox for muscle spasticity have experienced symptoms of botulism. In some cases the symptoms have led to hospitalization and even death, according to the FDA.

Botulism symptoms may occur when the toxin spreads from the site of injection and include:

• Loss of muscle strength
• Difficulty speaking or hoarseness
• Vision problems
• Trouble breathing or swallowing
• Loss of bladder control

The agency is now requiring a bold black box warning on the labels of Botox and related botulinum toxin products. Parents of children with cerebral palsy who have questions or concerns about the risks associated with Botox should discuss this new warning with their physicians.



 

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Researchers are now looking into robotics as a way to improve muscle movement and coordination in children with cerebral palsy. This area of research is relatively new, but already great strides have been made.

In fact, research in this area has been so promising that Riley Hospital in Indianapolis will soon be home to the Robotics Clinical Center for Children with Cerebral Palsy. The center will be publicly funded and if you’re in the Indianapolis area, you can help support it by attending a fundraising event being held on May 5th.  

If you would like to learn more about how robots are helping to change the future of cerebral palsy treatment, watch this webcast on the Cerebral Palsy International Research Foundation website. It provides a brief look into the world of robotics and cerebral palsy.

 

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Children with cerebral palsy sometimes require special accommodations, and many parents wonder how they can accommodate their child in the car. A new blog post by United Cerebral Palsy addresses this issue and provides a number of helpful resources, including:

• The American Academy of Pediatrics
• The Automotive Safety Program
• Easter Seals/Goodwill of Central Ohio

Go to the UCP blog, or learn more about Cerebral Palsy by checking out our ‘What is Cerebral Palsy’ page.

 

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Botox is sometimes used to reduce muscle spasticity, a rather common cerebral palsy symptom. But research suggests that it may also help reduce the risk of hip dislocation, which is a problem in some children with cerebral palsy.

Traditionally braces have been used to prevent hip dislocation, but one study compared the use of braces to the use of Botox injections in 16 patients between 9 months and 4 years of age. According to the researchers, some of the patients benefitted from the Botox injections. However, the authors add that more extensive studies need to be done.

If your child has cerebral palsy, you may wish to talk to your doctor about the risk of hip dislocation. Each child is unique, so the treatment options for your child will depend on his or her particular circumstances.  

 

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The national disability advocacy organization United Cerebral Palsy (UCP) is one of more than 20 groups coming together to support the much needed Inclusive Home Design Act. The Act is designed to increase accessibility in homes built with federal assistance.

Parents of children with severe cerebral palsy symptoms or other mobility issues know all too well the difficulties associated with finding accessible (and affordable) homes. Less than five percent of new homes built with federal assistance include features aimed at making them more accessible for people with mobility impairments to visit and live in.

The Inclusive Home Design Act seeks to change that by increasing the number of accessible homes built with federal money.

“Universal standards for homes built with federal money are long past due. Implementing accessible features when homes are built is a simple matter of fairness, cost effectiveness and common sense,” said Rep. Jan Schakowsky of Illinois, who introduced the legislation.

Accessible Features
If passed, the legislation will only affect new homes and will not cover renovations to existing homes. The bill will also require that new homes also meet a number of accessibility criteria, including:

• Widen doorways on the main floor for a greater space of passage
• Feature at least one “zero step” entryway and one wheelchair accessible bathroom on the ground floor
• Make controls for lighting and temperature reachable from wheelchair heights

Such modifications are relatively inexpensive (usually less than a few hundred dollars) when done at the time the house is built, as opposed to making renovations at a later point, which can cost upwards of several thousand.

Some states and cities have already adopted inclusive housing standards: Texas, Vermont, Kansas and certain cities in Illinois and Arizona.




 

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California State University Northridge (CSUN) is holding its 24th Annual International Technology and Persons with Disabilities Conference from March 16th-21st in Los Angeles. This year’s conference will focus on trends in assistive technology (AT) and will feature Keynote Speaker Anthony Coelho, the former U.S. Congressman who sponsored the American with Disabilities Act.

Assistive technology is basically anything that helps persons with disability in their daily lives. Wheelchairs, communication devices and similar aids are common examples of assistive technologies. For children and adults with cerebral palsy, there are many types of AT that can help individuals better manage their symptoms.

Registration is currently open – visit the CSUN website to learn more.



 

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The Pediatric Neurology Cerebral Palsy Center at St. Louis Children’s Hospital and Washington University School of Medicine are presenting the 5th Annual Cerebral Palsy Conference: Building the Road to Independence on March 27-28, 2009.

It promises to be a great conference for parents to attend, featuring talks a wide variety of topics such as:
 

• Epilepsy in children with cerebral palsy
• The safety and efficacy of Botox treatment
• Orthopedic management
• Vision problems associated with cerebral palsy
• Selective dorsal rhizotomy
• Intrathecal baclofen pumps
• Individualized therapeutic strategies
• Creative therapy for the hemiplegic hand
• Sports and adaptive physical education
• Martial arts
• Primary care issues for cerebral palsy patients

In addition, there will be question and answer sessions each day, a children’s panel , a teen panel, and a dance performance. Registration is currently open – If you’re interested, you can see the agenda and find out more about registration here.

 

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Our medical lawyers are always on the lookout for great new resources to share with parents of kids affected by cerebral palsy, and we recently came across a website called Parlerai. The site was created last year by the parents of a young girl with special needs, and its aim is to improve communication and collaboration among caregivers.

Taking care of a child with special needs can be a full-time job in and of itself, and the burden is on parents to make sure the lines of communication are open among all their child’s care providers. This is not always an easy task, a fact both Jon and Kristin Erickson soon realized after the birth of their daughter.

That’s why they decided to create Parlerai – to help others like themselves create a secure network of family, friends and healthcare providers in the interest of fostering increased collaboration and communication.

Parlerai offers a variety of affordable services for families, including:

• A closed and secure network for you, your child and anyone involved in your child’s life – features a database for parents to store documents, pictures, etc.
• A shared media library
• A calendar/scheduling function
• Alerts for urgent messages
• Blogs and instant messaging

To learn more about all this site has to offer, click here.  


 

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If your child has been diagnosed with cerebral palsy, it’s likely you have lots of questions – the first of which is undoubtedly “what is cerebral palsy?” There are lots of great resources on the Web to help you answer this question, including a new podcast on the Centers for Disease Control and Prevention website.

The  CDC podcast describes the causes, preventions, types, and signs and symptoms of cerebral palsy and is part of one organization’s efforts to raise cerebral palsy awareness. That organization, Reaching for the Stars, has also partnered with the CDC to add a new cerebral palsy fact sheet to the agency’s website.

We recommend both the CDC and Reaching for the Stars websites as good starting places for learning more about CP and ways to get involved in raising awareness.

 

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If passed, pending legislation in Illinois will require insurance companies to cover treatment costs for children with cerebral palsy, autism and other physical disabilities. The new governor has not said whether he will approve the bill, which could affect tens of thousands of children across the state.

Insurance companies currently deny what they consider “habilitative” treatment, or treatment intended to help children develop new skills or ones they haven’t mastered. Without insurance coverage, many parents are unable to afford therapies that could improve their child’s life.

“It’s an important bill for families with kids that need this therapy,” said Senator Maggie Crotty, one of the sponsors of the bill.

 

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Maintaining accurate medical records on your child is a must. However, record keeping tends to become more difficult when the child has a condition such as cerebral palsy. This is because children with special needs spend more time at the doctor’s office and often see multiple specialists.

Organizing medical records can help you give your child the best care possible. It will allow you to provide doctors with an accurate timeline of diagnoses, treatments and procedures your child has undergone, and in this way, you can help your child’s medical providers coordinate their efforts.

So how do you keep track of your child’s medical history? In the current issue of Parenting Special Needs online magazine, one mother shares the secrets that have worked for her.  The article even includes a downloadable PDF for recording the contact information of your child’s providers.

If you haven’t already developed a record keeping system of your own, this looks like a good place to find some useful advice and get started.


 

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January is National Birth Defects Prevention Month, and this year’s awareness topic is “Obesity Prevention and Weight Management – Before, During and After Pregnancy.” Obesity is a national epidemic that gives rise to numerous health problems, but many are unaware that pregnancy complications are among those problems.

According to the March of Dimes, approximately one in every 33 babies is born with a birth defect each year in the United States. A birth defect is defined as an abnormality that results in physical or mental disability (and sometimes death). The causes of birth defects are largely unknown, but some may be attributed to genetic factors, environmental factors, or some combination of the two.

Reducing Risk Caused by Environmental Factors

Alcohol consumption, maternal health (including weight), infections, medications, exposure to certain chemicals—these are all environmental factors that increase the risk of birth defects in a newborn. While it’s not always possible to prevent birth defects, paying attention to environmental factors such as these can help reduce the risk.

For instance, certain infections are known to increase the risk of cerebral palsy and timely diagnosis and treatment can help prevent the development of the condition. Likewise, alcohol consumption is known to result in a birth defect known as fetal alcohol syndrome so avoiding alcohol during pregnancy will ensure that the fetus doesn’t develop this defect.

Help Raise Awareness

There are numerous ways you can help raise awareness for the prevention of birth defects. The National Birth Defect Prevention Network (NBDPN) provides informational packets and materials on its website and also gives ideas on how to reach out to others.
 

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The Assistive Technology Industry Association is celebrating its 10th annual conference in Orlando on January 28-31. Anyone interested in learning more about assistive technology is invited to attend, and it’s a great opportunity for parents of children with cerebral palsy to talk to leading AT vendors and have some of their questions answered.

Kids are welcome too, and for those with disability, it’s a chance to get some hands-on experience with new technologies. Some of the products and technologies to be featured at the conference include:
 

• Learning and literacy aids
• Computer access
• Communication devices
• Vision and hearing aids
• Games
• Adaptive devices and accessories

Families can use the conference to network, share ideas, attend educational sessions and talk to professionals in fields ranging from medicine to education. Those who wish to attend can register online. A registration fee applies, but the conference is free to the public during certain times (a pass can be printed from the site).

Further information about the conference can be found here.
 

 

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Good oral hygiene is particularly important for children with cerebral palsy, who often experience a range of dental issues. For instance, kids with cerebral palsy tend to suffer from the following:
 

• Poor dental alignment
• Dental erosion caused by gastroesophageal reflux and/or vomiting
• Gingivitis caused by certain medications, especially seizure drugs
• Damaging oral habits such as teeth grinding, regurgitation, compulsive eating of non-edible substances and pouching (holding food in the pocket between the teeth and cheek for prolonged periods)

Good Oral Hygiene Starts at Home

One of the best ways of preventing oral health problems is by practicing good oral hygiene at home. The following are a few tips for taking care of your child’s teeth at home:
 

• Make sure to brush your child’s teeth after every meal and each dose of medication, which almost always contain sugar.
• Use a toothpaste approved by the American Dental Association
• Support your child’s head while brushing, and be sure to give lots of praise
• Provide your child with a healthy, low-sugar diet
• Take your child in for regular teeth cleanings and evaluations

Finding a dentist who specializes in the care of special needs patient is not always easy, but it will make a significant difference in the level of care your child receives. Children with cerebral palsy tend to have special needs when it comes to dental care: Some kids may need to be treated under general anesthesia, and others who have severe gag reflex may require special dental radiographs. Also, there may be special considerations for fillings and bridgework.

The National Foundation of Dentistry for the Handicapped, the Special Care Dentistry Association and the Association of State and Territorial Dental Directors are all great resources for those needing to locate special dental services in their area.


 

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Assistive Technology Blog Carnival is a blog hosted by educator and AT specialist, Lon Thornburg, and he’s asking you to submit ideas, reviews, and stories about your favorite tech gadgets. The goal is to post a “carnival” of ideas for people to use this coming holiday season.

Children with cerebral palsy or other special needs often benefit from assistive technologies – technologies that facilitate learning, mobility, and enjoyment of life. Assistive technologies include gadgets ranging from video games and specialized computers to movement and speech tools.

If you’re a parent of a special needs child and you have thoughts to share about a particular AT item, post a submission by December 12th. Low-cost or inexpensive suggestions might be especially useful for those experiencing financial hardship.

For those looking for gift ideas, suggestions for the holiday AT Blog Carnival will be posted on December 15th.

 

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The winter holiday season is one of the busiest in terms of travel, and many families prepare weeks or even months in advance to ensure their travel plans go as smoothly as possible. For families of children with cerebral palsy or similar disability, planning seamless travel often requires some additional considerations.

Listed below are some travel tips and resources for families traveling with a special needs child:
 

• Notify the airline in advance if you will need assistance
• Tag all equipment and mobility devices with identification information
• Pack medications separately
• Ask a security officer for assistance through the checkpoint if necessary
• Arrive early to give your family extra time to make it through security
• Be patient

Remember also that you have a right to remain by your child’s side during the security process and that the security officer is not permitted to remove your child from his/her mobility device.

For more helpful travel tips and advice, visit the Transportation Security Administration website or check out United Cerebral Palsy’s webpage on travel.

Happy traveling!

 

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Children with special needs such as cerebral palsy tend to require significant emotional and physical support from their parents. However, siblings of special needs kids often have needs of their own and parents can help meet these needs through programs specifically designed for sibling support.

One such program is The Sibling Support Project. This national nonprofit organization is dedicated to increasing support for siblings of children with disabilities and mental illness. The Project works to achieve its mission through:
 

• Informational workshops
• Listserv hosting for peer discussions
• Training community service providers to create sibling peer groups (Sibshops)

By visiting the organization’s website, parents can find a Sibshop in their area or learn how to start one. Parents can also join the SibParent listserv to discuss the unique issues, joys and concerns associated with raising children with and without special needs.

 



 

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Studies have shown that Multi Sensory Environments (MSEs) can improve the quality of life of children and adults with emotional, physical and developmental disabilities. According to the Hidden Angels Foundation, MSEs “promote intellectual activity and encourage relaxation” through multi-sensory stimulation.

MSEs are specifically designed to meet the user’s individual needs and may incorporate a variety of visual, tactile and auditory experiences. For instance, an MSE may include:

• Special lighting such as bubble lamps, colored lights, mirrored balls, etc.
• Tactile objects such as textured wall paper, soft or vibrating toys, bean bag chairs
• Sound effects including rhythmical music or sounds from nature

Children with cerebral palsy often face physical and/or cognitive challenges, and an MSE may help a child cope with or overcome their challenges. MSEs can also be used to provide relaxation, which is often an issue for kids with spastic cerebral palsy.

There are MSEs in various locations throughout the country, but you can also try to create a special space in your home for your child. Visit the Hidden Angels Foundation website to learn more about MSEs.

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President George W. Bush recently proclaimed November as National Family Caregivers Month, making this November the first annual celebration of parents, grandparents, siblings and other family caregivers who make daily sacrifices for their loved ones.

As parents of children with cerebral palsy know, caring for a loved one with special needs often comes with everyday challenges (and rewards too). But caregivers should remember also to take care of themselves, a task that is all too often neglected. 

This month, if you’re a family caregiver or know someone who is, check out the National Family Caregivers Association website for tips on how to celebrate.

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