Developmental Disabilities Information

Developmental disabilities (also called intellectual disabilities) are characterized by significant impairments in intellectual skills and in daily living skills. Developmental disabilities can be present at birth or have an onset during childhood.

The American Association on Intellectual and Developmental Disabilities is a leading professional organization dedicated to supporting people with intellectual and developmental disabilities. They offer comprehensive information about the definition of intellectual disabilities.

Developmental Disabilities can have many causes, including genetic or environmental causes, diseases, or, in rarer instances, birth trauma or traumatic brain injury early in life. For some developmental disabilities the causes are not yet well understood. 

Who oversees developmental disabilities services in New York State?

Services for people with developmental disabilities in New York are coordinated by the Office for People With Developmental Disabilities (OPWDD). New York State has specific criteria for determining if an individual is eligible to receive services for a developmental disability. Refer to their Eligibility for OPWDD Services - Important Facts for more detailed information.

What is Mountain Lake Services?

Mountain Lake Services provides services for people with developmental disabilities in Essex County, NY. We have regulatory oversight from OPWDD but we are a private, not-for-profit organization. We are a chapter of NYSARC, a statewide organization founded by family members of people with developmental disabilities. We have a strong value for family connections, and our agency is overseen by a Board of Directors that includes people with developmental disabilities and family members of people with developmental disabilities.

What are some of the common developmental disabilities and associated disorders?

Autism Spectrum Disorders

Autism is a form of developmental disability characterized by impairments that affect a person's ability to communicate and interact with others, or with their environment.  As there can be wide differences between how autism affects different people, autism is considered to be a spectrum of disorders.  Some common early symptoms of autism include:

  • Lack of (or delay in) spoken language
  • Repetitive speech or vocalizations
  • Repetitive habits (e.g. flapping hands, rocking, twirling objects)
  • Little or no eye contact
  • Lack of interest in peer relationships
  • Lack of typical, spontaneous childhood play
  • Fixation on objects, parts of objects, or specific subjects

Autism Speaks and Autism NOW are good resources for more information about autism spectrum disorders.

Cerebral Palsy

Cerebral Palsy is a disorder of muscular tone and coordination. Muscles can be either weak and floppy, or stiff and rigid. Movement can be difficult and unsteady. A person with cerebral palsy may have a tendency to develop contractures, though physical therapy may reduce the effects. Typical symptoms of cerebral palsy include:

  • Lack of coordination in using the muscles, difficulty with fine motor tasks
  • Muscular tremors
  • Stiff muscles with exaggerated reflexes
  • One foot or leg trailing or dragging when walking
  • Difficulties swallowing, sucking, or speaking
  • Cerebral Palsy may be accompanied by intellectual impairment, but not in all cases. Some people with Cerebral Palsy have no intellectual impairment at all.

The March of Dimes has more information about Cerebral Palsy.

Down Syndrome

Down Syndrome is a fairly common genetic variation (approximately 1 in 700 births) where the person has an extra chromosome. Common characteristics of a person who has Down Syndrome may include:

  • Low muscle tone
  • A deep crease across the center of the palm of the hand
  • A smaller than normal stature
  • A slightly flattened facial profile
  • An upward slant to the eyes
  • Other medical complications may be present, such as heart defects, respiratory problems, and gastrointestinal tract abnormalities
  • Intellectual impairments, often mild to moderate

People with Down Syndrome may exhibit a wide range of these features and characteristics. You can find more information on Down Syndrome through the National Down Syndrome Society, the National Association for Down Syndrome, and the National Down Syndrome Congress.

Fragile X

Fragile X is the most common known cause of inherited intellectual impairment. It is also commonly associated with autism or autistic-like behaviors. Fragile X covers a range of genetic disorders that are all caused by dysfunction of a specific gene located in the X chromosome. When observed under a microscope, the X chromosome appears to be "fragile" or broken at this point - and this is how the syndrome was given its name.

Common characteristics of the syndrome can include:

  • Large, protruding ears
  • A long face
  • Low muscle tone
  • Intellectual impairment
  • Delay in developing motor skills (e.g. late crawling, walking, toileting)
  • Poor eye contact or gaze aversion
  • Sensory overload - the person has a high sensitivity to noises, crowds, textures, etc.
  • Impulsivity and possibly behaviors characteristic of autism or attention deficit/hyperactive disorder
  • Habits such as flapping the hands, biting the hands

Both males and females can carry the Fragile X gene, but not everyone who has this gene will be affected by the syndrome. When they are affected, males typically show more severe signs of the disorder than do females.

The National Fragile X Foundation and the FRAXA Research Foundation have more information on Fragile X.

Seizure Disorders

 A seizure disorder, also called epilepsy, is a neurological condition that can cause seizures. Seizures are a brief but strong surge of electrical activity in the brain that can interfere with physical and mental functions of the body in various ways.

There are several forms of seizures. Most people associate seizures with shaking of the entire body, but other forms of seizure exist. The person’s consciousness may or may not be impaired. While seizure disorders may accompany some forms of developmental disability, many people who have seizure disorders have no impairment in intellectual functioning.

Seizure disorders can be caused by problems with brain development before birth, by illness (such as meningitis or encephalitis), or by head trauma. However, often the cause for the seizure disorder is not known.

For more information about seizure disorders, refer to the Epilepsy Foundation of America.

Traumatic Brain Injury

Traumatic brain injury (TBI) is a major cause of death and disability. Children can be particularly prone to brain injury, and such injuries can affect their development. Common causes are falls, vehicle or bicycle accidents, violence, and sports activities. The head does not need to be struck to cause a brain injury. Violent shaking or sudden acceleration/deceleration of the head can be enough to cause a brain injury.

Traumatic brain injury can lead to many long-term impairments or abnormalities in functional skills or behavior.  These may include:

  • Problems with thinking or memory
  • Impairment to the senses (sight, sound, taste, touch, smell)
  • Difficulty communicating
  • Behavioral abnormalities (depression, anxiety, personality changes, aggression, social inappropriateness)
  • Stupor, coma, or a vegetative state

The National Institute of Neurological Disorders and Stroke is a good source of information and further references for traumatic brain injury.

Preventable Causes of Developmental Disabilities

Many developmental disabilities have no known cause, and cannot be prevented. However, there are some factors that increase the risk for having a child with a developmental disability. Mountain Lake Services believes we should do all we can to raise awareness to help prevent developmental disabilities due to these preventable causes:

Poor Prenatal Care

A child’s body and brain undergo an amazing development during pregnancy. Any ill effects during this critical time can lead to lasting impairments and disabilities. Good prenatal care is important to make sure your baby has the best possible conditions as it develops. Be sure to see your doctor regularly and follow all medical advice during pregnancy.

Alcohol

The use of alcohol during pregnancy is the leading known cause of preventable mental and physical birth defects in the United States. Alcohol easily passes from the mother to the child through the placenta, and the child’s developing body and brain are more susceptible to the effects of alcohol. Fetal Alcohol Syndrome can cause a slow growth rate, failure to thrive, problems with coordination, and significant functional problems in cognition and behavior. Avoiding all alcohol during pregnancy can prevent these disabilities.

Substance Abuse

The use of illegal drugs is also very damaging to a child during pregnancy. The use of any illegal drugs can cause complications such as premature delivery, underweight babies, birth defects including intellectual impairment, and withdrawal symptoms at birth. As with alcohol, these effects can be avoided by not using any illicit substances during pregnancy.

Child Abuse

Child abuse can be a significant factor in causing traumatic brain injury in a child. Any abuse that involves injury to the head can lead to neurological damage with the potential to cause a lifelong disability. Babies are particularly vulnerable as their skeletons and brains are still developing. Shaken Baby Syndrome can occur if a baby or young child is shaken violently. The damage can be caused simply by the shaking – the head does not have to strike against a hard surface to cause a brain injury. The shaking can cause damage to blood vessels and nerves in the brain, bleeding and bruising in the brain, or even tears in the brain’s tissue. Babies and young children should never be shaken.

More Information

The March Of Dimes is a good source of information on what you can do to have a healthier pregnancy and a healthier baby.

Why is early intervention important?

Studies have shown that when a child is born with or develops a disability, early intervention can be critical to minimize the impact of the disability on the child’s functional skills. With proper services and therapy many of the symptoms of the disability can be minimized, and the child can develop the adaptive skills needed to maximize their capabilities and their independence. Mountain Lake Services believes in the value of early intervention and offers these services to families who have young children diagnosed with developmental disabilities.

What services and supports benefit people with developmental disabilities?

At Mountain Lake Services we believe that the most important service we provide for people with developmental disabilities is the ability to experience full and rich lives in our neighborhoods and communities. It is through the normal routines and activities of daily life, and the social connections made, that people experience growth in their skills and abilities and a sense of well-being. We strive for small, individualized service environments that foster interaction and inclusion. We also follow individualized approaches, developing our service plans around the life goals of the person. We provide service coordination to ensure the person receives all services necessary to meet their needs, both within and outside our agency.

Since developmental disabilities are characterized by impairments in life skills, people with developmental disabilities benefit from targeted skills development. These may be academic skills such as reading, writing and math, daily living skills such as meal preparation and household upkeep, work skills such as attention to tasks and following instructions, or the social skills to interact with others in a variety of relationships. Our services focus on helping people acquire the skills they need to enrich their lives and achieve their individual goals.

Our services also see to the holistic health needs of each person. We provide the supports and advocacy to ensure people receive excellent medical and dental care. We help them to learn about healthy diets and personal habits. We provide opportunities for exercise and recreation to stimulate both the mind and the body. We are there to provide a listening ear and a helping hand to help them through the struggles and challenges we all face in our lives.

Some people with developmental disabilities may need specialized clinical services. These services include speech and language, physical, and occupational therapies, as well as psychological and psychiatric services. Mountain Lake Services uses its own clinical staff, consultants, and community resources to meet the individual needs of each person receiving services.