Question 1

The New York State Department of Health

Accepted Answer

www.health.ny.gov/community/infants_children/early_intervention
 
The New York State Department of Health administers the Early Intervention Program that offers a variety of therapeutic and support services to eligible infants and toddlers with disabilities and their families. To be eligible for services, children must be under 3 years of age and have a confirmed disability or established developmental delay, as defined by the State, in one or more of the following areas of development: physical, cognitive, communication, social-emotional, and/or adaptive.

Question 2

What is Day Habilitation Without Walls

Accepted Answer

OPWDD defines Day Habilitation Without Walls (W.O.W.) as “habilitation services that may be provided to an individual regardless of his or her living environment, and regularly takes place in a non-residential setting, separate from the individual’s private residence or other home.  Day Habilitation services can assist individuals to acquire, retain or improve their self-help, socialization and adaptive skills, including communication, travel and other areas in adult education.  Activities and environments are designed to foster the development of skills and appropriate behavior, greater independence, community inclusion, relationship building, self-advocacy and informed choice. Additionally, individuals accessing day habilitation often contribute to their communities through volunteer work”.

Question 3

What are HCBS Waiver Services?

Accepted Answer

OPWDD administers this HCBS Waiver. It is OPWDD's primary funding mechanism for supporting individuals in the community by providing a variety of services and supports that are uniquely tailored and individualized to meet each person's needs. These services can include habilitation services, respite care, service coordination, and adaptive technologies. Services are provided either by OPWDD's Developmental Disabilities Services Office (DDSO) staff or through voluntary not-for-profit agencies who have been authorized to provide HCBS waiver services by OPWDD or the NYS Department of Health (DOH).

Question 4

Legal Services of New York (LSNY)

Accepted Answer

https://www.legalservicesnyc.org
 
Legal Services of New York programs provide legal assistance in the areas of housing, family, and benefits, as well as in areas of growing importance to clients such as consumer, education, foreclosure prevention, and disability rights.

Question 5

What is Community Habilitation ?

Accepted Answer

Community Habilitation is a service designed to assist individuals with developmental disabilities in fostering skills that promote independence in the home and in the community. Supports include adaptive skill development, assistance with activities of daily living, community inclusion, and relationship building, training and support for independence in travel, adult educational supports, development of social skills, leisure skills, self-advocacy and informed choice skills, and appropriate behavior development to help the individual access their community. Individuals participating in this service will work one-on-one with a Community Habilitation Specialist either at home or in the community on developing skills needed to achieve individualized goalso to app settings and press "Manage Questions" button.

Question 6

The Individuals with Disabilities Education Act (IDEA)

Accepted Answer

The Individuals with Disabilities Education Act (IDEA) is the federal law that secures special education services for children with disabilities from the time they are born until they graduate from high school or reach the age of 21, whichever a student reaches first. Ld Online provides a copy of IDEA which is formatted in a way that makes the law more accessible.
 
The document can be found at: www.ldonline.org/features/idea2004#purpose

Question 7

What is Autism?

Accepted Answer

Autism is a lifelong, neurodevelopmental disorder characterized by difficulty with socialization and communication skills. It can result in mild to severe difficulties in thinking and learning and is frequently marked by unusual interests and repetitive behaviors such as twirling, rocking, and flapping one’s hands. Autism can significantly impede an individual’s ability to lead a fulfilling life and mature to independence. It is believed to be a dysfunction in the central nervous system (the brain and spinal cord). Although knowledge of the possible causes and effective treatment of autism is growing, to date, no cure exists. Symptoms typically occur by the time a child is three years old.

Question 8

New York State Education Department, Office of Special Education’s Office of P-12 Education"

Accepted Answer

www.p12.nysed.gov/specialed
 
The Special Education Office provides assistance to parents, advocacy groups, and schools related to services and programs for students with disabilities. Staff work together across various units to provide the most up to date policy and guidance, technical assistance, professional development, and monitoring to attain equal opportunities and positive results for students with disabilities across New York State.

Question 9

What is the Autism Spectrum

Accepted Answer

Autism is one specific condition within a larger group of conditions known as Autism Spectrum Disorders (ASD). You may find the words autism, ASD and Pervasive Developmental Disorders (PDD) are used interchangeably. The word “spectrum” is important in understanding autism because it refers to the wide range of behavioral signs, symptoms, and degrees of severity that affect individuals. Individuals on the autism spectrum include those with Autistic Disorder, Pervasive Developmental Disorders, and Asperger Disorder. In addition, Rett Syndrome and Childhood Disintegrative Disorder – two very rare, but serious disorders – are also included under the Pervasive Developmental Disorders . Each individual on the autism spectrum is just that – an individual. Their unique characteristics and needs are specific to them alone.
 
Despite their individual differences, many people with an ASD share similar struggles. Individuals with an ASD often have difficulty understanding, initiating and/or maintaining conversations and interpreting what others are thinking, feeling or saying. In addition to difficulties in socializing and communicating, many have unusual ways of playing, paying attention, and reacting to different sensations and situations. This sensitivity to sensory stimulation can make life extremely challenging. Environmental conditions, such as certain sounds, smells or textures, that are acceptable to others can be intolerable to someone with an ASD. Some people with an ASD become overly focused on a very narrow interest such as a specific topic or object. They may be resistant to changes in routine and seek to adhere to rituals. Individuals with an ASD often have difficulty regulating their behavior and may engage in self-comforting or self-stimulating behaviors. As a result of these characteristics, everyday situations can become a challenge for individuals with an ASD and their families.
 
Faced with these tremendous challenges, people on the autism spectrum often need significant supports and understanding to enjoy a meaningful and successful life. The challenges of raising a child with an ASD can place enormous stress on the entire family. It is essential that a family with a loved one who has an ASD understand the impact of this disability on their family, surround themselves with a network of supports and appropriate services and be vigilant in seeking the help they need.

Question 10

Section 504

Accepted Answer

Section 504 is a federal law designed to protect the rights of individuals with disabilities in programs and activities that receive Federal financial assistance from the U.S. Department of Education (ED). Section 504 provides: "No otherwise qualified individual with a disability in the United States . . . shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance . . . ." In language that is accessible to parents, the Office of Civil Rights, the government agency responsible for enforcing Section 504, answers Frequently Asked Questions About Section 504 and the Education of Children with Disabilities.
 
The document can be found at: www2.ed.gov/about/offices/list/ocr/504faq.html
 
Understanding your rights under IDEA as compared to Section 504 can be complicated. The document: Understanding the Differences Between IDEA and Section 504 helps you distinguish their purposes, scope of the laws and the type of services available under each law.
 
The document can be found at: www.ldonline.org/article/6086

Question 11

Who qualifies to receive DayHabilitation?

Accepted Answer

The following criteria must be met by the applicant in order to qualify for Community Habilitation services:
Must be age 21+ and have graduated from the Department of Education;
Must reside in New York City (Bronx or Manhattan)
Must be diagnosed with a developmental disability

Question 12

The Children's Law Center

Accepted Answer

https://www.clcny.org
 
Each year in New York City, thousands of children are the subjects of legal disputes that can be very contentious and very emotional. The outcomes to these cases deeply affect the lives of the children involved. Yet, while each adult has an opportunity to speak to the Court, the child's voice is often faint or not heard. The mission at The Children's Law Center ("CLC") is to give children strong and effective voices in legal proceedings that have a critical impact on their lives.

Question 13

How do I apply for a Waiver Service?

Accepted Answer

Do you have a Care Manager?
 
If yes, your Care Manager will have to contact the Program Supervisor, and submit the following documents on your behalf:
Approval Letter (Your Care Manager will need to request the approval letter from the borough DDRO by submitting the original justification letter and an Addendum for Service form)
Initial Level of Care
Annual Life Plan (needs to be up-to-date)
Copy of the Addendum for Service form
Waiver Packet
If you do not have an Care Manager, you will have to apply and begin receiving Care Coordination services from an agency or organization.
 
Child & Family Support Services is affiliated with the Care Coordination agency CareDesign NY.  If you would like to receive your care coordination services from CareDesign NY, please contact:  (646) 491-6497  ext 202018

Question 14

The New York State Parent Network

Accepted Answer

www.nysparentnetwork.org
 
The NYS Parent Network is a coordinated group of organizations that provide support and information for parents of children with disabilities via a seamless delivery system throughout New York State. The NYSPN partners are the four U.S. Department of Education-funded Parent Training and Information Centers (PTIC) in New York State and the Community Parent Resource Center, United We Stand.

Question 15

Mobilization For Justice

Accepted Answer

http://mobilizationforjustice.org
 
MOBILIZATION FOR JUSTICE, formerly MFY Legal Services, offers free legal assistance to low-income New Yorkers throughout New York City to resolve legal problems in the areas of housing; foreclosure; civil, disability and aging rights; bankruptcy, tax, consumer, employment, government benefits, immigration, and kinship care. Through these services they prevent homelessness, help seniors and people with disabilities live independently, stabilize families, maintain and increase income, and address racial disparities.

Question 16

Who does Autism affect?

Accepted Answer

The ASDs occur in all racial, ethnic, and socioeconomic groups, and except for Rett’s Disorder, are four times more likely to occur in boys than in girls. Children who have a sibling or a parent with an ASD should be observed carefully, as recent studies suggest that some people may have a genetic predisposition to autism. In families that have one child with autism, scientists have found the risk of having a second child with the disorder is 1 in 20, or 5 percent.

Question 17

New York State Law

Accepted Answer

New York State has additional laws that implement IDEA and other Federal regulations. New York has generally made more services available than required by IDEA. Understanding your rights under the law is complicated and is interpreted through case law.
 
The link below is provided as a reference to understanding the rights of students with disabilities under state law. www.p12.nysed.gov/specialed/lawsregs/part200.htm

Question 18

Who qualifies to receive Community Habilitation?

Accepted Answer

The following criteria must be met by the applicant in order to qualify for Community Habilitation services:
Must be age 3 or up; not enrolled in Early Intervention services
Must reside in New York City (Bronx, Manhattan, Brooklyn, or Queens)
Must be diagnosed with a developmental disability

Question 19

New York Lawyers for the Public Interest

Accepted Answer

http://nylpi.org
 
New York Lawyers for the Public Interest is a nonprofit, civil rights law firm that strives for social justice. In partnership with member law firms, corporate law departments and other organizations, NYLPI helps underrepresented people develop legal strategies to serve their vision for themselves and their communities.

Question 20

Local Regulations, Policies and Practices"

Accepted Answer

The Chancellor’s Regulations are local regulations applicable to students attending a public school in New York City. Certain regulations pertain to students with disabilities and include: Regulation A-420, A-443, A-501, A-710 and A-715.
 
The Regulations may be found at: https://www.schools.nyc.gov/school-life/policies-for-all/chancellors-regulations
 
The NYC Standard Operating Procedures Manual (SOPM) serves as a comprehensive guide to the referral, evaluation, and placement processes for school-age students suspected of having a disability and those who are already identified. The purpose of this Standard Operating Procedures Manual (SOPM) is to provide support and guidance to the management and staff of the New York City Department of Education. It does not create any enforceable rights, remedies, entitlements or obligations.
 
https://infohub.nyced.org/docs/default-source/default-document-library/specialeducationstandardoperatingproceduresmanualmarch.pdf?sfvrsn=4cdb05a0_2

Question 21

How common is Autism?

Accepted Answer

ASDs are the fastest-growing diagnoses among the developmental disabilities in the United States. According to the Autism Society of America, the diagnosis of autism is increasing at a rate of 10 to 17 percent a year. Depending on the reporting methods used, recent estimates of ASD prevalence range between 1 in every 150 children to and 1 in every 91 children having a diagnosis of ASD. At this rate, ASDs are more common than pediatric cancer, diabetes and AIDS combined.

Question 22

The Office of People with Developmental Disabilities (OPWDD)

Accepted Answer

www.opwdd.ny.gov
 
OPWDD is committed to providing a variety of supports and services for individuals with developmental disabilities. “Putting people first,” means giving people with developmental disabilities as much individual choice and control over their own lives as possible.
 
OPWDD Provider Directory
http://providerdirectory.opwdd.ny.gov
 
OPWDD contact e-mail for complaints, opinions
people.first@opwdd.ny.gov

Question 23

Where can I find more information on Austism?

Accepted Answer

To answer parents' questions about autism spectrum disorders,
the American Academy of Pediatrics (AAP) offers a collection of interviews
with pediatricians, researchers and parents. 
 
https://www.healthychildren.org/English/health-issues/conditions/Autism/Pages/default.aspx

Question 24

How long will I have to wait before I/my child begins to receive service?

Accepted Answer

After the application has been completed and submitted by your Care Manager, the Community Habilitation Supervisor will contact the family and the Care Manager and inform them on whether or not the services were approved by the Office for People with Developmental Disabilities (OPWDD). This takes about 4 weeks after the application has been submitted through the Choices System.

Question 25

Parent to Parent of New York

Accepted Answer

www.parenttoparentnys.org
 
Parent to Parent of NYS is a statewide not for profit organization with a mission to support and connect families of individuals with special needs. Parent to Parent of NYS is a statewide network of diverse families with people who have developmental disabilities and special health care needs. Family members share their experience, build relationships and offer emotional support.

Question 26

Wrightslaw

Accepted Answer

www.wrightslaw.com
 
Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities. Wrightslaw is a very comprehensive website with an extensive directory of special education topics, issues and resources.

Question 27

What is Cerebral Palsy?

Accepted Answer

Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood.  CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. The symptoms of CP vary from person to person. A person with severe CP might need to use special equipment to be able to walk, or might not be able to walk at all and might need lifelong care.  A person with mild CP, on the other hand, might walk a little awkwardly, but might not need any special help. CP does not get worse over time, though the exact symptoms can change over a person's lifetime. Many people also have related conditions such as intellectual disability ; seizures; problems with vision ,hearing, or speech; changes in the spine (such as scoliosis); or joint problems (such as contractures).

Question 28

New York State Unified Court System

Accepted Answer

www.courts.state.ny.us/ip/adr/cdrc.shtml
 
The New York State Unified Court System partners with local non-profit organizations, known as Community Dispute Resolution Centers (CDRCs), to provide mediation, arbitration and other dispute resolution options as an alternative to court. Every year, CDRCs help thousands of New Yorkers resolve a wide range of disputes involving: Landlords and Tenants, Parents and Children, Child Custody and Visitation (Parenting Issues), Families and Schools

Question 29

Developmental Disabilities Planning Council (DDPC)

Accepted Answer

http://ddpc.ny.gov
 
The New York State Developmental Disabilities Planning Council is a Federally-funded New York State Agency working and is responsible for developing new ways to improve the delivery of services and supports to New Yorkers with developmental disabilities and their families. The Council focuses on community involvement, employment, recreation and housing issues faced by New Yorkers with developmental disabilities and their families.

Question 30

Can I choose the gender/ethnicity/language of my Community Habilitation Specialist?

Accepted Answer

Yes. The Community Habilitation Supervisor will do his/her best to match the consumer and their family with a Specialist who they feel comfortable with.

Question 31

Where will the service be provided?

Accepted Answer

Individuals participating in this service will work one-on-one with a Community Habilitation Specialist either at home or in the community on developing skills needed to achieve individualized goals.

Question 32

Office of the Public Advocate

Accepted Answer

http://pubadvocate.nyc.gov/
The job of the Public Advocate is that of a watchdog, ensuring that all New Yorkers receive the City services they deserve and have a voice in shaping the policies of their government. The Public Advocate also influences City planning, the budget process, and the management of retirement funds. The Public Advocate provides public school parents a voice in the education system; making government more efficient and transparent; and helping New Yorkers in need.

Question 33

Information and Opportunities for People with Disabilities

Accepted Answer

https://www.dol.gov/odep/topics/disability.htm

Question 34

What Waiver Services Does CFSS provide?

Accepted Answer

- Community Habilitation
- Day Habilitation Without Wall
- In-Home Respite
- Supported Employment

Question 35

What are the types of Cerebral Palsy?

Accepted Answer

Doctors classify CP according to the main type of movement disorder involved. Depending on which areas of the brain are affected.
 
There are four main types of CP: Spastic Cerebral Palsy: The most common type of CP is spastic CP. Spastic CP affects about 80% of people with CP. People with spastic CP have increased muscle tone. This means their muscles are stiff and, as a result, their movements can be awkward. Spastic CP usually is described by what parts of the body are affected.
 
Dyskinetic Cerebral Palsy: People with dyskinetic CP have problems controlling the movement of their hands, arms, feet, and legs, making it difficult to sit and walk. The movements are uncontrollable and can be slow and writhing or rapid and jerky. Sometimes the face and tongue are affected and the person has a hard time sucking, swallowing, and talking. A person with dyskinetic CP has muscle tone that can change (varying from too tight to too loose) not only from day to day, but even during a single day.
 
 Ataxic Cerebral Palsy: People with ataxic CP have problems with balance and coordination. They might be unsteady when they walk. They might have a hard time with quick movements or movements that need a lot of control, like writing. They might have a hard time controlling their hands or arms when they reach for something.
 
Mixed Cerebral Palsy: Some people have symptoms of more than one type of CP. The most common type of mixed CP is spastic-dyskinetic CP.

Question 36

The Northern Manhattan Improvement Corp.

Accepted Answer

https://www.nmic.org
 
The Northern Manhattan Improvement Corporation (NMIC) is a community-based not-for-profit organization that serves the Washington Heights and Inwood communities that provides free legal services to families who are located in Washington Heights and Inwood from 155th St. to 220th street. Other services include programs for children under 6 exposed to lead and landlord and tenant housing issues/eviction prevention.

Question 37

What is Respite

Accepted Answer

Respite services provide temporary relief from the demands of care giving, which helps reduce overall family stress. This often enables families to better meet the needs of their loved one with a developmental disability. Respite can be provided in the home or out of the home, during the day, evenings or overnight.
 
Respite is an “indirect” service that provides relief to individuals who are responsible for the primary care and support of an individual with a developmental disability. When a family member, Family Care provider, or live-in/house-parent staff person has to deal with such things as illness, emergency, and care giver or staff vacation, respite services can ensure that their loved one’s needs are met.

Question 38

What are the early signs?

Accepted Answer

The signs of CP vary greatly because there are many different types and levels of disability. The main sign that a child might have CP is a delay reaching motor or movement milestones (such as rolling over, sitting, standing, or walking). Following are some other signs of possible CP. It is important to note that some children without CP also might have some of these signs.
 
- In a Baby Younger Than 6 Months of Age
     - The baby's head lags when you pick him up while he’s lying on his back
     - The baby feels stiff
     - The baby feels floppy
     - When held cradled in your arms, the baby seems to overextend his back and neck, constantly acting as if he is pushing away from you
     - When you pick him/her up, the baby's legs get stiff and they cross or scissor
- In a Baby Older Than 6 Months of Age
     - The baby doesn’t roll over in either direction
     - The baby cannot bring her hands together
     - The baby  has difficulty bringing her hands to her mouth
     - The baby  reaches out with only one hand while keeping the other fisted
- In a Baby Older Than 10 Months of Age
     - The baby crawls in a lopsided manner, pushing off with one hand and leg while dragging the opposite hand and leg
     - The baby scoots around on his buttocks or hops on his knees, but does not crawl on all fours

Question 39

New York City Office for People with Disabilities

Accepted Answer

www.nyc.gov/html/mopd/html/home/home.shtml

Question 40

Screening and diagnosis?

Accepted Answer

Diagnosing CP at an early age is important to the well-being of children and their families. Diagnosing CP can take several steps:
 
Developmental Monitoring : Developmental monitoring (also called surveillance) means tracking a child’s growth and development over time. If any concerns about the child’s development are raised during monitoring, then a developmental screening test should be given as soon as possible.
 
Developmental Screening: During developmental screening a short test is given to see if the child has specific developmental delays, such as motor or movement delays. If the results of the screening test are cause for concern, then the doctor will make referrals for developmental and medical evaluations.
 
Developmental and Medical Evaluations: The goal of a developmental evaluation is to diagnose the specific type of disorder that affects a child.

Question 41

U.S. Citizenship and Immigration Services (USCIS)

Accepted Answer

www.uscis.gov
U.S. Citizenship and Immigration Services (USCIS is the government agency that oversees lawful immigration to the United States. U.S. Citizenship and Immigration Services (USCIS) is the federal agency that oversees lawful immigration to the United States.  It is a component of the Department of Homeland Security. Some of the services provided include: Citizenship (Includes the Related Naturalization Process) , Immigration of Family Members, Working in the U.S., Humanitarian Programs

Question 42

Are their treatments and intervention services?

Accepted Answer

There is no cure for CP, but treatment can improve the lives of those who have the condition. It is important to begin a treatment program as early as possible. After a CP diagnosis is made, a team of health professionals works with the child and family to develop a plan to help the child reach his or her full potential. Common treatments include medicines; surgery; braces; and physical, occupational, and speech therapy. No single treatment is the best one for all children with CP. Before deciding on a treatment plan, it is important to talk with the child’s doctor to understand all the risks and benefits.

Question 43

The Mayor's Office of Immigrant Affairs

Accepted Answer

https://www1.nyc.gov/site/immigrants/index.page
 
The Mayor's Office of Immigrant Affairs promotes the well-being of immigrant communities by recommending policies and programs that facilitate successful integration of immigrant New Yorkers into the civic, economic, and cultural life of the City. If you're an immigrant to New York City, this office can help you identify which City services you can access; find a community-based organization that can address your needs and with a staff person who speaks your language; and get information about your pending applications from U.S. Citizenship and Immigration Services (formerly the INS).

Question 44

Can my loved one receive speech therapy at CFSS?

Accepted Answer

CFSS provides speech therapy for students ages 3-21. Your family member or student must have an initial speech-language evaluation and an Individual Education Plan (IEP) in order to qualify for speech therapy at CFSS. School aged children (ages 5-21), must have a Related Services Agreement letter, from the NYC Department of Education,  to initiate services.

Question 45

Northern Manhattan Coalition for Immigrant Rights (NMCIR)

Accepted Answer

https://nmcir.org
 
The Northern Manhattan Coalition for Immigrant Rights (NMCIR), is a non-profit organization, founded in 1982 to educate, defend and protect the rights of immigrants. NMCIR works on issues such as immigration, citizenship, deportation and voter participation focusing on keeping families together, facilitating integration and building community power. Most of the individuals who walk through the doors of the Coalition are low-income, non-citizen immigrants from the Caribbean, Latin America, and increasingly, Africa and the Middle East.

Question 46

What are the causes and risk factors?

Accepted Answer

CP is caused by abnormal development of the brain or damage to the developing brain that affects a child’s ability to control his or her muscles. There are several possible causes of the abnormal development or damage. The brain damage that leads to CP can happen before birth, during birth, within a month after birth, or during the first years of a child’s life, while the brain is still developing. CP related to brain damage that occurred before or during birth is called congenital CP. The majority of CP (85%–90%) is congenital. In many cases, the specific cause is not known. A small percentage of CP is caused by brain damage that occurs more than 28 days after birth. This is called acquired CP, and usually is associated with an infection (such as meningitis) or head injury.

Question 47

What is Down Syndrome?

Accepted Answer

Down syndrome is a condition in which a person has an extra chromosome. Chromosomes are small “packages” of genes in the body. They determine how a baby’s body forms during pregnancy and how the baby’s body functions as it grows in the womb and after birth. Typically, a baby is born with 46 chromosomes. Babies with Down syndrome have an extra copy of one of these chromosomes, chromosome 21. A medical term for having an extra copy of a chromosome is ‘trisomy.’ Down syndrome is also referred to as Trisomy 21. This extra copy changes how the baby’s body and brain develop, which can cause both mental and physical challenges for the baby.
 
Even though people with Down syndrome might act and look similar, each person has different abilities. People with Down syndrome usually have an IQ (a measure of intelligence) in the mildly-to-moderately low range and are slower to speak than other children.
 
Some common physical features of Down syndrome include:
- A flattened face, especially the bridge of the nose
- Almond-shaped eyes that slant up
- A short neck
- Small ears
- A tongue that tends to stick out of the mouth
- Tiny white spots on the iris (colored part) of the eye
- Small hands and feet
- A single line across the palm of the hand (palmar crease)
- Small pinky fingers that sometimes curve toward the thumb
- Poor muscle tone or loose joints
- Shorter in height as children and adults
 
Down syndrome remains the most common chromosomal condition diagnosed in the United States. Each year, about 6,000 babies born in the United States have Down syndrome. This means that Down syndrome occurs in about 1 out of every 700 babies.

Question 48

What are the types of Down Syndrome?

Accepted Answer

There are three types of Down syndrome.
 
Trisomy 21: About 95% of people with Down syndrome have Trisomy 21. With this type of Down syndrome, each cell in the body has 3 separate copies of chromosome 21 instead of the usual 2 copies.
 
Translocation Down syndrome: This type accounts for a small percentage of people with Down syndrome (about 3%). This occurs when an extra part or a whole extra chromosome 21 is present, but it is attached or “trans-located” to a different chromosome rather than being a separate chromosome 21.
 
Mosaic Down syndrome: This type affects about 2% of the people with Down syndrome. Mosaic means mixture or combination. For children with mosaic Down syndrome, some of their cells have 3 copies of chromosome 21, but other cells have the typical two copies of chromosome 21. Children with mosaic Down syndrome may have the same features as other children with Down syndrome. However, they may have fewer features of the condition due to the presence of some (or many) cells with a typical number of chromosomes.

Question 49

Causes and risk factors?

Accepted Answer

The extra chromosome 21 leads to the physical features and developmental challenges that can occur among people with Down syndrome. Researchers know that Down syndrome is caused by an extra chromosome, but no one knows for sure why Down syndrome occurs or how many different factors play a role. One factor that increases the risk for having a baby with Down syndrome is the mother’s age. Women who are 35 years or older when they become pregnant are more likely to have a pregnancy affected by Down syndrome than women who become pregnant at a younger age. However, the majority of babies with Down syndrome are born to mothers less than 35 years old, because there are many more births among younger women.

Question 50

What is Fragile X Syndrome?

Accepted Answer

Fragile X syndrome (FXS) is a genetic disorder.  FXS is caused by changes in the fragile X mental retardation 1 (FMR1) gene. The FMR1 gene usually makes a protein called fragile X mental retardation protein (FMRP). FMRP is needed for normal brain development. People who have FXS do not make this protein. People who have other fragile X-associated disorders have changes in their FMR1 gene but usually make some of the protein. FXS affects both males and females. However, females often have milder symptoms than males. The exact number of people who have FXS is unknown, but it has been estimated that about 1 in 5,000 males are born with the disorder.

Question 51

What are the signs and symptoms?

Accepted Answer

Signs that a child might have FXS include: developmental delays (not sitting, walking, or talking at the same time as other children the same age); learning disabilities (trouble learning new skills); and social and behavior problems (such as not making eye contact, anxiety, trouble paying attention, hand flapping, acting and speaking without thinking, and being very active). Males who have FXS usually have some degree of intellectual disability that can range from mild to severe. Females with FXS can have normal intelligence or some degree of intellectual disability. Autism spectrum disorders (ASDs) also occur more frequently in people with FXS.

Question 52

Diagnosis?

Accepted Answer

FXS can be diagnosed by testing a person's DNA from a blood test. A doctor or genetic counselor can order the test. Testing also can be done to find changes in the FMR1 gene that can lead to fragile X-associated disorders. A diagnosis of FXS can be helpful to the family because it can provide a reason for a child’s intellectual disabilities and behavior problems. This allows the family and other caregivers to learn more about the disorder and manage care so that the child can reach his or her full potential. However, the results of DNA tests can affect other family members and raise many issues. So, anyone who is thinking about FXS testing should consider having genetic counseling prior to getting tested.

Question 53

Treatments?

Accepted Answer

There is no cure for FXS. However, treatment services can help people learn important skills. Services can include therapy to learn to talk, walk, and interact with others. In addition, medicine can be used to help control some issues, such as behavior problems. To develop the best treatment plan, people with FXS, parents, and health care providers should work closely with one another, and with everyone involved in treatment and support—which may include teachers, childcare providers, coaches, therapists, and other family members. Taking advantage of all the resources available will help guide success.

Question 54

Early Intervention Services?

Accepted Answer

Early intervention services help children from birth to 3 years old (36 months) learn important skills. These services may improve a child’s development. Even if the child has not been diagnosed with FXS, he or she may be eligible for services. These services are provided through an early intervention system in each state. Through this system, you can ask for an evaluation. In addition, treatment for particular symptoms, such as speech therapy for language delays, often does not need to wait for a formal diagnosis. While early intervention is extremely important, treatment services at any age can be helpful.

Question 55

What is an Intellectual Disability?

Accepted Answer

Intellectual disability, is a term used when there are limits to a person’s ability to learn at an expected level and function in daily life. Levels of intellectual disability vary greatly in children from a very slight problem to a very severe problem. Children with intellectual disability might have a hard time letting others know their wants and needs, and taking care of themselves. Intellectual disability could cause a child to learn and develop more slowly than other children of the same age. It could take longer for a child with intellectual disability to learn to speak, walk, dress, or eat without help, and they could have trouble learning in school.
 
Intellectual disability can be caused by a problem that starts any time before a child turns 18 years old – even before birth. It can be caused by injury, disease, or a problem in the brain. For many children, the cause of their intellectual disability is not known. Some of the most common known causes of intellectual disability like Down syndrome, fetal alcohol syndrome, fragile X syndrome, genetic conditions, birth defects, and
infections happen before birth. Others happen while a baby is being born or soon after birth. Still other causes of intellectual disability do not occur until a child is older; these might include serious head injury, stroke, or certain infections.

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