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If you’re the parent of a cerebral palsy child or a child with disability, it’s a good idea to stay up-to-date on legislative decisions that may affect your child’s education, health care, and future in general. The American Association of People with Disabilities (AAPD) is a great starting point to find out what’s being done for disability rights – and it’s a great starting point for becoming an activist for your child.
 

Below are some recent news and highlights from the disability community:

• Confirmation hearings for Judge Sonia Sotomayer’s appointment to the U.S. Supreme Court begin on Monday, July 13, 2009. A coalition of disability groups has spoken out in support of Judge Sotomayer, who has a history of justly deciding disability cases.
• President Barack Obama nominated Alexa Posny for Assistant Secretary for Special Education and the Senate confirmed disability rights leader Kathy Martinez as Assistant Secretary of the Office of Disability Employment Policy (ODEP).
• Representative Ed Markey (D-MA) introduced the 21st Century Communications & Video Accessibility Act of 2009, which seeks to ensure that Internet video and telecommunications are accessible to people with disability.
• July 26, 2009 marks the 19th anniversary of the passing of the Americans with Disabilities Act (ADA). The AAPD plans to celebrate this landmark Act on July 22.

To learn more about cerebral palsy or disability activism, visit the AAPD website or United Cerebral Palsy.

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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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This year’s United Cerebral Palsy (UCP) Annual Conference – Growing an Agile Potent Network – was held in San Francisco last weekend. In case you weren’t able to make it, UCP is helping you to catch up on what you missed.

The group’s blog (UCPeople.org) features several posts which overview the weekend’s events, sessions and current trends, including:

• Award for Excellence winners
• Siblings as caregivers
• Emerging technologies
• Social networking
• Legislative priorities
• More

UCP is a great resource for parents of a child with cerebral palsy or other disability. The organization is national with local affiliates across the country. If you have a cerebral palsy child, you can learn more about the condition, additional resources, advocacy and much more by contacting your local UCP affiliate.



 

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Summertime is approaching, and many parents are considering camp opportunities for their children. There are camps across the country that cater their programs to children with cerebral palsy and other disabilities. Below are a few resources that can help you in your search to find the best summer camp for your child:

Parenting Special Needs article on summer camps – provides detailed descriptions of various camps from Florida to Texas and California

UCP Listing of Summer Camps – offers comprehensive camp guides as well as information on individual camps

Very Special Camps – a website devoted to providing information on camps and programs for people with special needs. Camps can be searched according to a specific disability.
 

Easter Seals Residential and Day Camps – by contacting the organization through their website, you can learn more about Easter Seals camps across the U.S.

In our search for resources, we also came across two individual camps geared toward children with cerebral palsy: Shady Oaks Cerebral Palsy Camp in Homer Glen, Illinois and Camp Jabberwocky in Martha’s Vineyard. We think their sites might be worth checking out as well.

 

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According to My Child without Limits, nearly two-thirds of children with developmental disabilities such as cerebral palsy, mental retardation and epilepsy also suffer from vision loss. The more severe the visual impairment, the more likely are additional health complications and delayed learning.

However, there is training and therapy available. If your child suffers from this particular cerebral palsy symptom, you may want to look into the following resources:

Family Connect, a site for parents of children with visual impairments
 

American Association of Pediatric Opthamology and Strabismus - AAPOS
 

Prevent Blindness America - Children's page

United Cerebral Palsy, My Child without Limits and the Easter Seals are additional organizations that may be able to assist you in your search for vision impairment resources.

 

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On March 24th, the United States Senate designated March 25, 2009 as National Cerebral Palsy Awareness Day. Support for the measure was led by Senator Arlen Specter.

Now is a great time to celebrate by learning more about cerebral palsy symptoms. You may also wish you check out the website for the United Cerebral Palsy affiliate in your area to find out ways to raise awareness.

 

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Staying organized is one of the greatest challenges caregivers and parents of special needs children face. Recently, one of our medical attorneys came across a great resource that can help families stay organized – a series of forms developed by United Cerebral Palsy that can be used for anything from doctor’s visits to notes for the babysitter.

The forms can be downloaded as PDF files from www.mychildwithoutlimits.com and include:

“All About Me” form – which you can give to your child’s school (teacher, nurse, counselor, etc.) or to a babysitter when you need a break

“Just in Case” sheet – for making sure emergency information is easily accessible to anyone who needs it

“Trip to the Doctor” form – to prepare for and keep track of doctor’s appointments

“Contact Sheet” – for keeping a record of phone calls made regarding your child’s care

“Medication Listing” form – for documenting the types of medication your child requires, when, how much, etc.

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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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Financial worries are compounding for many families right now, some of whom have experienced job losses, loss of health insurance and even the threat of foreclosure. Among those hardest hit by the current economic recession are families caring for a child with cerebral palsy or other disability.

Shrinking state budgets often lead to the cutting of vital disability services and support, and this leaves many families in dire financial and emotional straits. It’s no surprise that given the high stakes of the economic downturn that the coming 2009 Disability Policy Seminar will focus on the funding of disability programs such as health care and long-term services.

The seminar, which is titled A New Era: Embracing Opportunities in the Face of Grave Challenges, will take place in Washington D.C. from April 27th-29th. Space is limited, so you may want to register now at UCP website if you’re interested.


 

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Did you know that March is Cerebral Palsy Awareness Month? You can celebrate by raising awareness in your local community. There are various ways you can spread the word about cerebral palsy, including:

• Coordinating outreach events
• Submitting letters to the editors of local publications
• Blogging about the condition

In addition, you can contact your local United Cerebral Palsy (UCP) affiliate to find out when and where any special events are being held. If you live in the Atlanta area, you might want to consider attending an event sponsored by the Centers for Disease Control and Prevention (CDC) on March 20th.

 

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United Cerebral Palsy (UCP) is a national CP association that has recently launched a new website aimed at helping families and professionals in four ways:

• to better understand developmental disabilities like cerebral palsy;
• to provide guidance with regard to early intervention services;
• to act as advocates for those with developmental disabilities; and
• to connect people through a social networking community.

The website is called My Child without Limits and in addition to the four main goals listed above, the site also features tips, news and resources.


 

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There are perhaps no greater advocates for children who have received a cerebral palsy diagnosis than their parents. Two significant ways parents can help their children are through:

Activism – raising disability and CP awareness; and
Public policy – understanding how it affects children with disabilities such as cerebral palsy and advocating for change where needed.

Where to Get Started
United Cerebral Palsy is a national organization with local affiliates across the country dedicated to promoting change and progress for individuals living with disability. UCP is a great place for parents who are looking to get involved in activism and public policy to start.

The UCP website features a Public Policy Action Center, with information on advocacy campaigns, and a Public Policy Calendar for those interested in staying current. In addition, the UCP blog posts weekly policy updates.

Another helpful resource for parents who want to get more involved is JFActivist, which is a blog on public policy by two groups: the American Association of People with Disabilities and Justice for All. The blog provides information on current affairs, important issues, opportunities for action and much more.

All of these sites are good starting points for parents who wish to be the best advocates they can be for their cerebral palsy child.

 

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Given the tremendous impact assistive technology can have on the lives of children and adults with cerebral palsy, it’s unfortunate that the devices are often out of reach financially for many families. One cerebral palsy resource families may want to look into is the Bellows Fund.

The Bellows Fund is named after Elsie S. Bellows, who in 1995 left money to United Cerebral Palsy (UCP) to provide assistive technology funding to families that demonstrate financial need. Families with a special need child and individuals with disability may apply for a grant from various UCP affiliates nationwide.

Grant money must be used to purchase approved assistive technology devices, defined by the government as:

Any piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain or improve functional capabilities of individuals with disabilities.

Items that qualify as assistive technology under this definition include:

• Wheelchairs
• Hearing/visual aids
• Van lifts
• Computer equipment

To learn more about qualifying for a Bellows Fund grant, contact your local UCP affiliate. If your affiliate does not offer the grant, you may wish to encourage them to apply for funding.

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United Cerebral Palsy, a national cerebral palsy association, has its annual conference coming up in April. This year’s conference theme is “Growing an Agile Potent Network: Connect. Collaborate. Evolve.” – continuing the organization’s emphasis on Life without Limits.

Attendees will have an opportunity to connect with others in the disability community and discuss the future of disability advocacy, including necessary services and resources. On the evening of the 23rd, conference participants can attend the Awards for Excellence ceremony, honoring exceptional individuals and organizations.

Awards that will be given include:

• Life without Limits Award
• Ethel Hausman Volunteer of the Year Award
• Employer of the Year Award
• Outstanding Community Service Award
• Universal Accessibility Design Award

Nominations for these awards are being accepted until February 18th. Visit the UCP website to enter your nomination.

The conference will be held in San Francisco from April 22 – 25th, and registration is now open. Individuals who register before February 8th will receive a discount. Single day reservations are also available, as are individual tickets to the awards ceremony.



 

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More than $30,000 was raised for UCP Wheels for Humanity at the third annual Rock to Roll benefit in West Hollywood on December 14th. The event featured rockers from bands such as Social Distortion, Bad Religion, NOFX and Pennywise, among several others.

The money will go to support UCP Wheels for Humanity, which has been donating refurbished wheelchairs to those in need since 1996. Over 40,000 children and adults in countries across the world have received free wheelchairs through the program.

United Cerebral Palsy is a leading advocacy group for individuals with cerebral palsy and other disabilities and the group has more than 100 local affiliates throughout the United States.



 

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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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A young man with mild cerebral palsy is raising money for United Cerebral Palsy (UCP) by stilt-walking in the Grand Rapids Marathon in Michigan on October 19th. This isn’t his first marathon on stilts, and he’s hoping this year he can beat his personal best time.

Earlier this year, Neil Sauter drew national attention when he walked from one end of Michigan to the other on stilts. The 800+ mile journey took him about 8 weeks, but he raised nearly $80,000 for the UCP of Michigan Assistive Technology Loan Fund.

Neil believes that people with disabilities should have access to the tools and technologies necessary to improve their lives. He has his own website at www.stiltstory.org.

 

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