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Frequently Asked Questions 1. What do we know about N1H1 (Swine Flu) and Down syndrome? At this time (10/20/2009) the DSALA has not had a member with Down syndrome report to us that they have tested positively for the N1H1 virus. We did however have two young adults pass away this month from infections that were originally thought to be the N1H1 flu; but after testing was performed they were found not to have the virus. The following information will give you information might be helpful as you care for the health of your family. First 5 LA “Preventing the spread of the N1H1 flu” CDC recommendations on people with neurodevelopment disorders and N1H1. http://downsyndrome.about.com/b/ Información en español acerca de N1H1 / Spanish Language info on N1H1 http://www.cdph.ca.gov/Pages/NR2009-80s.aspx 2. My child with Down syndrome has special needs. How will I pay for these services? The State of California Department of Developmental Services has 21 regional centers in the state that run programs and provide funding for individuals with defined disabilities that manifest before 18 years of age. Children with Down syndrome are eligible for these programs. Families whose infants or toddlers have or are at risk for developmental delay or disability can receive an "Early Start" in the State of California. Teams of service coordinators, healthcare providers, early intervention specialists, therapists, and parent resource specialists can evaluate and assess an infant or toddler and provide appropriate early intervention services to children eligible for California's Early Intervention system of services. Developing an individualized family services plan (IFSP) includes the performance of a timely, comprehensive, multidisciplinary evaluation and assessment of every child under age 3 who is referred for suspected developmental delay. If your child is determined to be eligible, you have the right to appropriate early intervention services. You have the right to provide information throughout the process and are encouraged to make decisions about your child’s early intervention services. Parents should check the link below to find the regional center in their home area and learn more about their programs. Call the local regional center to set up the intake process to enroll your child as a consumer. http://www.dds.cahwnet.gov/RC/Home.cfm Parents may refer to DSALA Glossary of Terms if they have questions on terms used in their conversations with regional center and other service providers. 3. Is there some type of school for children with Down syndrome? There is no individual school for children with Down syndrome. There are a number of different programs that can meet the needs of children with disabilities. Infants and toddlers through age three can be enrolled in Early Start. Through this program, children and their parents attend classes at designated early childhood centers. Some may be eligible for in-home services. After Early Start, there is a very important transition to preschool which requires working closely with your regional center service coordinator. The following document is very useful and contains valuable information: Moving on to Preschool.pdf Parents will continue to work with regional center as their children move through the educational system. The following document contains detailed specifics of rights and responsibilities throughout the process: http://www.pai-ca.org/PUBS/504001.pdf by Protection & Advocacy Inc. Find topics on Special education and how to get services Special Education Process, Los Angeles Unified School District Resources & Information Special Education Rights and Responsibilities Manual – http://tinyurl.com/4sdc57 Disability Rights California (formerly Protection & Advocacy Inc.) – 800/776-5746, www.disabilityrightsca.org Wrightslaw – www.wrightslaw.com Office of Clients’ Rights Advocacy – 866/833-6712 Appropriate education, not best education – http://tinyurl.com/4t9lqc CA Disability Community Action Network (CDCAN) – www.cdcan.us “Learn to Ask Questions, Get Services” http://tinyurl.com/3uxoyb Eight Steps to Better IEP Meetings http://tinyurl.com/27efzf The Laws of Adverse Assumptions http://tinyurl.com/4opfan A “Letter to a Stranger” http://tinyurl.com/4nu6hl Assessments http://tinyurl.com/hfagl
Contact your regional center service coordinator to explain the problems and determine the recommended course of action and referrals to eligible Behavioral Services. Each regional center has its own process. There are service providers listed in our online Resource List under Behavior Therapy. Helpful information is also contained in the following two articles: Positive Behavior Support at School Watch Video from LAUSD 5. How can I help my child with Down syndrome with speech and language development? “Although there are common speech and language problems, there is no single pattern of speech and language common to all children with Down syndrome. There are, however, speech and language challenges for most children with Down syndrome. . . All of the speech and language problems that children with Down syndrome demonstrate are faced by other children as well. There are no speech and language problems unique to children with Down syndrome. This means that there is a great deal of knowledge and experience that can be applied to helping a child with Down syndrome with his/her specific areas of challenge.” This text is from an article written by Libby Kumin and contained in the book, Informative articles by Libby Kumin, Ph.D, CCC-SLP, and Founder of The Center for the Study of Speech and Language in Children with Down Syndrome, Loyola College, Columbia, MD are available for download here:
Childhood Apraxia of Speech (CAS) is a motor speech disorder where children have difficulty planning, coordinating, producing and sequencing speech sounds. CAS interferes with the child’s ability to say sounds and to combine them into syllables, words, phrases and conversations. Other terms, such as developmental apraxia, dyspraxia, pediatric verbal apraxia or just apraxia all refer to the same problem. Some children with Down syndrome have characteristics of CAS, but many do not. Visit website: www.blueberryshoes.com to listen to excerpts or purchase videos on these topics:
6. What's IHSS and what services do they offer? The In-Home Supportive Services Program (IHSS) provides people who are blind, disabled, or over the age of 65 with personal assistance and in-home support services so they can remain in their homes or maintain employment safely. Services range from assistance with household chores to personal care and paramedical services. The program is often seen as an alternative to assisted living or nursing facilities. Any California resident is eligible, living in his/her own home who meets one of the following:
Resources Disability Rights California Downloads from Disability Rights California 7. How do I know if my child with Down syndrome also has the characteristics of Autism? The term, dual-diagnosis, refers to a person with a developmental disability, such as Down syndrome (DS) and a psychiatric disorder, such as an autistic spectrum disorder (ASD) also known as autism. In recent decades, there has been wider recognition that persons with DS can also have a co-existing psychiatric disorder. It is currently believed that the majority of children with DS do not have a coexisting psychiatric or behavioral disorder. However, each case is different. Parents can learn more in the following articles, which include signs and symptoms:
Disability Solutions Special Issue Articles on Down Syndrome & Autistic Spectrum Disorder Neurobehavioral Disorders in Children, Adolescents, and Young Adults With Down Syndrome |
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