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«A Guide f r Adults with o Developmental Disabilities Funded by California Department of Developmental Services 1600 9th Street Sacramento, CA 95814 ...»

-- [ Page 1 ] --

A Guide f r Adults with


Developmental Disabilities

Funded by

California Department of Developmental Services

1600 9th Street

Sacramento, CA 95814

Content and layout developed by

Allen, Shea & Associates

1780 Third Street

Napa, California 94559

Page II Health Information


I am entitled to good health care

To increase my knowledge and become more aware.

To know my body and what to expect

When something goes wrong, and I do get sick.

I want to know about my eyes and ears And when to seek medical attention without any fears.

I want to know what makes my heart beat And how to take care of my gums and teeth I want to know about my nose and mouth So I can understand without many doubts.

I want to know what makes me breathe And what happens when I sneeze.

I want to know about my stomach and intestines Of what I eat and of good nutrition.

I want to know what vaccinations I need To help and protect me from a specific disease.

I want to know when to call my doctor And what to tell him/her without any proctor.

I want to know about the medicines prescribed Of what they do to help me inside.

I want to know about my glands and my nerves I want to stay healthy, because it's what I deserve.

Irene Olsakowski Page III Introduction Page IV Health Information






Eyes & Ears

Lungs & Breathing

Mouth & Teeth



Bowel & Bladder


Men’s & Women’s Health

Infectious Diseases


–  –  –

The California Department of Development Services (DDS) has funded a series of activities to promote Wellness which will help ensure access to quality medical, dental, and mental health services with an emphasis on positive health outcomes. Taking a leadership role in this statewide effort, DDS has conducted research, developedbest practice guidelines, and improved professional expertise for services for persons with

developmental disabilities. Accordingly, the mission of this effort is:

–  –  –

Adapted from an on-line resource at the Department of Developmental Services website (http://www.dds.cahwnet.gov/).

Page VI Health Information



Consider the following scenarios:

• You are a caregiver/service provider and new to your job.

• You are an administrator and want to start providing training to staff on the special health care needs of people with developmental disabilities.

• You are a service provider and recently started providing residential services to an individual who has Down Syndrome with medical needs.

• You are a caregiver who recently started providing services and supports to someone who has digestive problems.

–  –  –

• You are a parent and want to find out what to expect when you go to the doctor’s office regarding a son or daughter’s possible hearing problems.

• You are a caregiver and want to teach some of your residents/direct caregivers about how the heart works and how to keep it healthy.

If you or someone you know has ever been in any of the above situations, this health information guide is for you.


In this guide, you will find 10 modules representing various systems of the human body (for example, Mouth & Teeth, Lungs & Breathing). In each of the modules, you will

find two sections:

–  –  –

Page VIII Health Information and how regularly it was taken, (c) whether it worked, and (d) whether it had any adverse side-effects.

• Ask for copies of medical records and ask the person’s primary care physician how, if at all, you can help him or her know about the person’s health history.

• Listen to health care professionals for information as to their findings (such as signs, symptoms, what they may mean), and make notes when you get home, so that as time passes, the notes can refresh your memory. Be sure to ask questions, and to repeat or rephrase questions, until you get informative answers to all of your questions.

• If a person you care for has one or more chronic conditions, such as juvenile diabetes or complex partial seizures, learn as much as you can about the condition and about treatment modalities. There are several sources of information, including (a) fellow parents or care providers; (b) physicians who specialize in treating people with a particular condition (e.g., at a Spina Bifida clinic); (c) support groups; (d) organizations (e.g., regional center; Down Syndrome League); (e) libraries; and (f ) the Internet.

Find Out What is Available: Services and Financial Assistance

• Learn what services (hospitals, programs) are available in your area to meet the health needs of the person in your care. Choose a primary care physician who is knowledgeable, experienced, communicative, understanding, and who provides quality services (timely, thorough, comprehensive, collaborative). Ask other parents or care-providers. Talk with doctors who have an interest in providing services to people with developmental disabilities.

• Ask fellow parents or care providers for leads to others who may be in a position to assist you in locating the service(s) you need, whether it’s a therapist or a specialist (for example, registered dietitian or neurologist).

• Besides knowing what services and supports are potentially available to meet a health need, learn about rights and entitlements. Again, talk with fellow parents and care providers who successfully get needs met, and ask them how they do it. Take advantage of trainings on the Individuals with Disabilities Education Act (IDEA), the Americans with Disabilities Act (ADA), and the Lanterman Developmental Services Act. Ask for copies, and read them. Join a parent organization, such as TASK, Matrix, or Parents Helping Parents. Call your local Area Board for information and support, when you need it.

–  –  –

Page X Health Information helping ration scarce resources to people who reveal a significant need by being persistent. Persistence pays!

• Express appreciation for good service. A sincere verbal expression of thanks can be important in cementing relationships with people. Tell the person what you liked about the services rendered. Many professionals field numerous complaints, but rarely experience the warmth and good feelings we all have when people express gratitude for something we have done.

• Keep good records of visits, telephone calls, or other communications with health care providers. Be sure to get the name of anyone you talk with by telephone. Make sure your notes are complete and dated. Request a written denial, if a service is not provided. These records can become important if a fair hearing or other conflict resolution processes become necessary.

–  –  –


Common Neurological Concerns of Adults with Developmental Disabilities

Risk Factors


Planning for a Successful Visit to the Doctor

Access to Medical Care

Neurological Care Resources

A Quick Review of When to Seek Medical Help

Prevention Curriculum for Instructors

–  –  –


The brain works like a computer. It collects information from various body parts, analyzes and sends back messages through the nervous system. These messages might have to do with walking, talking, seeing, hearing, remembering, learning, talking, feeling, and so on. If something happens to the brain or nervous system, it can affect some or all of the things we need to do each day. Some of the most common

neurological problems experienced by people with developmental disabilities include:

–  –  –

Page 16 Health Information Simple or Complex Partial These are seizures which affect only one part of the brain. A simple partial seizure may occur while someone is conscious and may cause involuntary movements of arms or legs. They may also cause unusual smells or feelings for the person having the seizure. A complex partial may include a variety of symptoms such as lipsmacking, staring, confusion, head or stomach pains, buzzing or ringing in the ears, changes in color perception, fear, anger, so on.

This type of seizure may last several minutes or several hours.


In addition to seizure disorders, there are other neurological problems that are associated with people with developmental disabilities.

Down Syndrome Individuals with Down Syndrome may also have two types of neurological problems. The first is a developmental problem which places them at risk for spinal cord injury and can result in partial or complete paralysis. The second is that many older individuals with Down Syndrome have been diagnosed with something very similar to Alzheimers, which is a deterioration of mental capacity.

Cerebral Palsy People with cerebral palsy have what is known as a nonprogressive neurological impairment. It is caused by an injury to the part of the brain that controls and coordinates muscles and usually happens before or at birth. In some persons, cerebral palsy may not be noticeable while others may have significant problems walking and talking.

Rett’s Syndrome The cause of this syndrome is unknown and only seems to be present in females (it may be lethal for males before birth). It can result in a general lack of coordination, an unusual walk, smaller than usual head size, constant hand wringing, and behavior challenges.

Microcephaly and Hydrocephaly Individuals with smaller or larger than usual head size usually have some type of neurological problem as well. This can include mental retardation and delayed motor development.

Tuberous Sclerosis This is a hereditary disease and consists of a number of small tumors on the surface of the brain. It usually results in a decline in mental capacity and a seizure disorder.

–  –  –

Page 18 Health Information


Individuals with developmental disabilities are at risk for neurological problems for a

variety of reasons, which include:

–  –  –

Page 20 Health Information




As a caregiver, if you see some signs of possible neurological problems (for example, rapid changes in behavior, memory loss), it’s important to make an appointment with a primary care physician as soon as possible. He or she can complete a thorough examination, provide some basic neurological screening tests and make a decision whether or not to refer to a specialist, such as a neurologist. The following are the major parts of a typical neurological screening test that would be used for someone with a developmental disability. They can be completed in the physician’s office and are not painful.

Checking for Reflexes The doctor will want to check for typical reflexes by tapping the knee or ankle lightly with a special, rubber-tipped hammer. He or she will also lightly touch the underside of the foot which may produce some movement in the big toe and suggest certain nervous system problems.

Muscle Strength and Tone Checking for muscle strength and the ease of arm and leg motion can suggest the presence and location of certain nervous system problems.

Coordination The physician may ask the individual to stand, walk or move in a certain way to see how the nervous system is controlling posture, coordination and balance.

Checking the Senses and Vision Since the nervous system controls the senses, the doctor may also use a number of sensory tests (for example, touching the skin with something cold or warm) or may complete a vision test.

Mental Status To check for memory loss or judgment, the physician may ask some questions of the individual (for example, is it day or night? or, when is your birthday?).


If referred to a neurologist, an individual with a developmental disability may be asked to complete an electroencephalogram (or EEG). This is also a painless test which involves attaching a series of electrodes to the scalp. The doctor then measures the rate, height and length of the brain waves to look for possible problems.

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Page 22 Health Information


If you don't have a primary care physician, calling your local medical society is the best way to find a doctor or who can serve people with special needs. Also, ask other individuals with developmental disabilities, parents or caretakers what physicians they prefer. For individuals with developmental disabilities who do not have medical insurance,

funding for medical services can be provided through:

Supplemental Security Income (SSI) Social Security Administration • 800-772-1213 General Information SSI benefits can also be used to pay for medical needs not provided by Medicare, Medicaid, or a residential institution.

Medi-Cal Department of Health Services • 916/657-5173 (General Information) Medi-Cal pays for physicians' visits and specialized testing (for example, electroencephalograms) if medically necessary.

County Hospitals County hospitals can also provide emergency medical services.

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