Cerebral Palsy

Cerebral Palsy Resource Information What is Cerebral Palsy? The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. (http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm) How Common is CP? About 500,000 people in America have some form of CP. Each year 8,000 infants and nearly 1,500 preschool-age children are diagnosed with CP. (http://www.nichcy.org/pubs/factshe/fs2txt.htm) What Are The Early Signs? Early signs of cerebral palsy usually appear before 18 months of age, and parents are often the first to suspect that their infant is not developing motor skills normally. Infants with cerebral palsy are frequently slow to reach developmental milestones, such as learning to roll over, sit, crawl, smile, or walk. This is sometimes called developmental delay. Some affected children have abnormal muscle tone. Decreased muscle tone is called hypotonia; the baby may seem flaccid and relaxed, even floppy. Increased muscle tone is called hypertonia, and the baby may seem stiff or rigid. In some cases, the baby has an early period of hypotonia that progresses to hypertonia after the first 2 to 3 months of life. Affected children may also have unusual posture or favor one side of their body. (http://www.ucp.org/ucp_generaldoc.cfm/1/9/37/37-37/447) Other signs may be a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait. (http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm) Cerebral palsy is characterized by an inability to fully control motor function, particularly muscle control and coordination. Depending on which areas of the brain have been damaged, one or more of the following may occur: muscle tightness or spasticity; involuntary movement; disturbance in gait or mobility, difficulty in swallowing and problems with speech. In addition, the following may occur: abnormal sensation and perception; impairment of sight, hearing or speech; seizures; and/or mental retardation. Other problems that may arise are difficulties in feeding, bladder and bowel control, problems with breathing because of postural difficulties, skin disorders because of pressure sores, and learning disabilities. (http://www.ucp.org/ucp_generaldoc.cfm/1/9/37/37-37/447) What Are The Causes Of Cerebral Palsy? Cerebral palsy is not a disorder with a single cause, like chicken pox or measles. It is a group of disorders with similar problems in control of movement, but probably with a variety of causes. Congenital cerebral palsy, results from brain injury during intra-uterine life. It is present at birth, although it may not be detected for months. It is responsible for about 70% of children who have cerebral palsy. An additional 20 % are diagnosed with congenital cerebral palsy due to a brain injury during the birthing process. In most cases, the cause of congenital cerebral palsy is unknown. Risk factors for cerebral palsy include the following: premature birth; low birth weight; inability of the placenta to provide the developing fetus with oxygen and nutrients; lack of growth factors during intrauterine life; RH or A-B-O blood type incompatibility between mother and infant; infection of the mother with German measles or other viral diseases in early pregnancy; bacterial infection of the mother, fetus or infant that directly or indirectly attack the infant's central nervous system; prolonged loss of oxygen during the birthing process and severe jaundice shortly after birth. (http://www.ucp.org/ucp_generaldoc.cfm/1/9/37/3737/447) A small number of children have cerebral palsy as the result of brain damage in the first few months or years of life, brain infections such as bacterial meningitis or viral encephalitis, or head injury from a motor vehicle accident, a fall, or child abuse. (http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm) Is There Any Treatment? Cerebral palsy can’t be cured, but treatment will often improve a child's capabilities. Many children go on to enjoy near-normal adult lives if their disabilities are properly managed. In general, the earlier treatment begins the better chance children have of overcoming developmental disabilities or learning new ways to accomplish the tasks that challenge them. Treatment may include physical and occupational therapy, speech therapy, drugs to control seizures, relax muscle spasms, and alleviate pain; surgery to correct anatomical abnormalities or release tight muscles; braces and other orthotic devices; wheelchairs and rolling walkers; and communication aids such as computers with attached voice synthesizers. (http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm) Typically, children with CP may need different kinds of therapy, including: * Physical therapy (PT), which helps the child develop stronger muscles such as those in the legs and trunk. Through PT, the child works on skills such as walking, sitting, and keeping his or her balance. * Occupational therapy (OT), which helps the child develop fine motor skills such as dressing, feeding, writing, and other daily living tasks. * Speech-language pathology (S/L), which helps the child develop his or her communication skills. The child may work in particular on speaking, which may be difficult due to problems with muscle tone of the tongue and throat. The child may also find a variety of special equipment helpful. For example, braces (also called AFOs) may be used to hold the foot in place when the child stands or walks. Custom splints can provide support to help a child use his or her hands. A variety of therapy equipment and adapted toys are available to help children play and have fun while they are working their bodies. Activities such as swimming or horseback riding can help strengthen weaker muscles and relax the tighter ones. (http://www.nichcy.org/pubs/factshe/fs2txt.htm) What Is The Prognosis? Cerebral palsy doesn’t always cause profound disabilities. While one child with severe cerebral palsy might be unable to walk and need extensive, lifelong care, another with mild cerebral palsy might be only slightly awkward and require no special assistance. Supportive treatments, medications, and surgery can help many individuals improve their motor skills and ability to communicate with the world. (http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm) Tips for Parents * Learn about CP. The more you know, the more you can help yourself and your child. See the list of resources and organizations. * Love and play with your child. Treat your son or daughter as you would a child without disabilities. Take your child places, read together, have fun. * Learn from professionals and other parents how to meet your child's special needs, but try not to turn your lives into one round of therapy after another. * Ask for help from family and friends. Caring for a child with CP is hard work. Teach others what to do and give them plenty of opportunities to practice while you take a break. * Keep informed about new treatments and technologies that may help. New approaches are constantly being worked on and can make a huge difference to the quality of your child's life. However, be careful about unproven new "fads." * Learn about assistive technology that can help your child. This may include a simple communication board to help your child express needs and desires, or may be as sophisticated as a computer with special software. * Work with professionals in early intervention or in your school to develop an IFSP or an IEP that reflects your child's needs and abilities. (http://www.nichcy.org/pubs/factshe/fs2txt.htm) RESOURCE INFORMATION FOR CEREBRAL PALSY BOOKS Segal, Marilyn Ph.D., et al. In Time and With Love: Caring for Infants and Toddlers with Special Needs. An easy-to-understand guide with suggested activities for young children with a variety of disabilities. Geralis, E. (1998). Children with cerebral palsy: A parents' guide (2nd ed Miller, F., & Bachrach, S.J. (1998). Cerebral palsy: A complete guide for caregiving. Nevada Early Intervention Services has a resource library available for families to check out books. If you are interested in books on CP call Shauna Buxton, NEIS Resource Coordinator at 775-866-1341. WEBSITES United Cerebral Palsy (UCP) national@ucp.org http://www.ucp.org Tel: 202-776-0406 800-USA-5UCP (872-5827) Pathways Awareness Foundation [For Children With Movement Difficulties] friends@pathwaysawareness.org http://www.pathwaysawareness.org Tel: 312-893-6620 800-955-CHILD (2445) Children's Hemiplegia and Stroke Assocn. (CHASA) info437@chasa.org http://www.hemi-kids.org Tel: 817-492-4325 MedLine Plus Government-produced reliable information on CP. Lots of links to other pages, research information, child-appropriate information and resources in Spanish http://www.nlm.nih.gov/medlineplus/cerebralpalsy.html NICHCY http://www.nichcy.org/pubs/factshe/fs2txt.htm A publication of the National Dissemination Center for Children with Disabilities Publicaciones en Español http://www.nacersano.org/centro/9388_9965.asp http://www.ninds.nih.gov/disorders/spanish/paralisiscerebral.htm http://www.cdc.gov/ncbddd/autism/ActEarly/spanish/cerebral_palsy.h tml PARENT-TO-PARENT SUPPORT CP Parent Network A parent-run networking and support group for families of kids with CP and other physical disabilities. Meets the third Sunday of the month in Reno. Kids are welcome. For more information contact: Nora Behrens 775-832-6890 cpparentnetwork@hotmail.com Online Yahoo Groups http://groups.yahoo.com Check out: KidPower, cerebralpalsy, BIA4Kids, CPecialparents, cerebralpalsymoms FINANCIAL SUPPORT Supplementary Security Income (SSI) SSI, or Supplemental Security Income, is a federal program that provides monthly cash payments to people in need. SSI is for people who are 65 or older, as well as for blind or disabled people of any age, including children. To qualify you also must have little or no income and few resources. A “disabled” person under the age of 18 is someone who meets the definition of disability for children in Social Security law. That is, he or she must have a medically determinable physical or mental impairment that results in marked and severe functional limitation(s), and which can be expected to result in death, or has lasted or can be expected to last for a continuous period of not less than 12 months. If you are not a U.S. citizen, but you are a resident, you still may be able to get SSI. For more information, ask for a copy of Supplemental Security Income (SSI) For Noncitizens (Publication No. 05-11051). If you get SSI payments, you usually can get medical assistance (Medicaid). However, you must apply for Medicaid at your local county welfare office. For more information and to find copies of Social Security publications, visit www.socialsecurity.gov or call toll-free, 1-800-772-1213 (for the deaf or hard of hearing, call our TTY number, 1-800-325-0778). They can answer specific questions and provide information by automated phone service 24 hours a day. FINANCIAL MEDICAL SUPPORT The state of Nevada offers several options to qualified individuals to aid in providing financial assistance for medical costs for children and their families. The Nevada Health Division handling Children With Special Healthcare Needs administers programs such as Medicaid, Nevada Check-Up, Temporary Assistance for Needy Families, Katie Beckett Medicaid, Healthy Kids and more. To learn more about the programs and to get applications, visit: http://health2k.state.nv.us/cshcn/financialsupport.htm or call 1-866-254-3964 If you need more help in figuring out these sometimes confusing healthcare programs, you can contact Nevada Covering Kids and Families at 775-323-2206 (Reno office). They are a non-profit organization that assists families in determining eligibility and applying for these state and local programs. RESPITE CARE Caring for a child with a disability can be hard work for parents and it is important for them to get time off every once in a while. Finding appropriate childcare for a special child can be difficult and expensive, but there are community organizations that can help provide a break for parents. This is called respite care and it is intended to give caregivers some time off – it is generally not allowed to be used to allow parents to go to work. The following programs all work differently and parents who qualify can use any or all of them: Sierra Regional Center (SRC) This is a State Agency in Sparks that provides supports to Nevadans of all ages who have developmental disabilities. If your child qualifies as having a developmental disability, you may be able to receive respite care funds. Here’s how it works: 1. You choose the caregiver and they register as a vendor with the state (this can be anyone BUT a parent, grandparents are OK) 2. You schedule care with the caregiver at the times and rates you and the caregiver agree on 3. You submit a timecard to SRC once a month 4. The caregiver receives a check from the state There is a limit to the funds you will receive. At the time of this writing, a family is given $600 for a six-month period. To apply for this program contact: Eric Dewitt-Smith Intake Coordinator at Sierra Regional Center 775-688-1930 Ext. 2132 Respite is only one of the programs that SRC provides, all programs that your family may qualify for will be explained at your intake interview. Eagle Valley Children’s Home Eagle Valley is a residential facility in Carson City that provides trained respite care in the home to families of children with developmental disabilities (CP is considered a developmental disability). Providers are trained in the care of your child and you schedule with the respite coordinator at Eagle Valley. There is a sliding fee scale dependent on family income and if the family participates in the Sierra Regional Center respite care program, Eagle Valley will bill SRC on behalf of the family. The caregivers will also care for siblings. There is often a waiting list for this program. To apply contact: Mary Huetig 775-882-1188 Ext 21 www.eaglevalleychildrenshome.org RAVE Family Center This is center-based care for children with disabilities. It is completely free to families. The center is open Tuesdays and Thursdays from 5:30 to 8:30pm and Saturdays from 10-1pm. There is a maximum of 12 children with disabilities and up to 13 caregivers. The location is behind Sparks High School in the Community Learning Center. They take children from 3 months to six years old, no medically fragile children. To apply to the program, contact RAVE at 775-334-9647 and they will send an application packet to be completed prior to respite services. OTHER COMMUNITY SUPPORTS Nevada Early Intervention Services (NEIS) NEIS is a State Agency that provides intervention services to children birth to 3 years old with developmental delays and disabilities at no cost to the parents. They also can help refer you to other community organizations that may assist your family. If you have questions about any of the resources in this packet, contact Shauna Buxton, Family Resource Coordinator at 688-1341. Friends of Special Children Friends of Special Children is a non-profit organization that serves and supports the families and staff of Nevada Early Intervention Services. They organize family fun events and help families get equipment they need, such as high chairs and strollers. They have a hearing aid lending program, and a diaper bank available for NEIS families. If you are in need of equipment or diapers, speak to your NEIS Service Coordinator. Information about educational or fun events will be mailed to you. For more information go to the website, which has interactive features to connect parents of children receiving NEIS services: www.friendsofspecialchildren.org, 775-677-1361 Project ASSIST Project ASSIST is a central resource directory for anyone seeking information about organizations, programs or agencies that may provide services and supports for children and young adults up to 21 years with disabilities, and their families. Information is available on: * * * * * * * * * * Parent Support Groups Respite Care Screening, Diagnosis or Assessment Early Intervention Programs for Infants and Toddlers Preschool Special Education Services Education, Health, and Social Service Agencies Physical, Occupational, Speech Therapy Counseling or Psychological Services Advocacy Organizations Life Planning, Financial or Legal Assistance Monday through Friday, 8:00 a.m. to 4:00 p.m., telephone calls are answered promptly when staff is available. There is 24-hour voice mail and calls are returned generally within two working days. The Project ASSIST data base yields a printout describing each selected resource and automatically generates a packet of information that is mailed to you on the same day, at no cost. CALL: 1-800-522-0066