CHRONIC MEDICAL CONDITIONS

A Multidisciplinary Team Approach

To Provide Continuous and Supportive Care

We are the Team The CONSUMER Family Direct care staff Supports Health care pros Therapists Oversight people

CONSUMER

The consumer is always the center of focus

Who might be included in the circle of supports Inner Circle Outer Circle

Who Is This Training for?

You Introduce yourself How do you support the consumer

Health Care Coordination Ensuring the health and safety of

the individual you work with The consumer and everyone

supporting this consumer is involved

Let us take a cue from Core training

Five Responsibilities of the Support Professional

1. Observe Use your senses – sight, hearing, smelling – to detect when changes are taking place with a person.

Five Responsibilities of the Support Professional

2. Document: Documenting what you’ve observed provides a snapshot for how a person is doing at a certain point in time. You’ll need to include both behavioral and physical observations in your documentation.

Five Responsibilities of the Support Professional

3. Report: Besides documenting what you’ve observed, you’ll often have to tell others – such as your supervisor, the individual’s legal representative, and medical personnel – about a person you’re caring for. Be ready to discuss:

     Changes in a person over time

      How long the changes have been happening      How often they change      Any new activities or changes in the person’s diet, or

anything else that might provide clues as to why the person is different.

Five Responsibilities of the Support Professional

4. Take Action: After you’ve reported a person’s situation to someone else, YOU must make sure people you care for receive the medical attention they need. You’ll need to learn the difference between life-threatening and non-life-threatening situations so that you’ll know what to do in each case.

Five Responsibilities of the Support Professional

5. Follow Up: You must follow up on the people who are receiving medical care to make sure they return to an optimal state of health. Tasks may include making sure the person completes prescribed rounds of medications, documenting changes in the person’s health, and pushing for adequate health care when the person does not show a positive response to the current treatment plan.

Deciding What Records to Keep

Document what you observe Forms used match the issues

observed Bowel charts, Urine charts, menstrual

cycle charts, weight charts Blood Pressure records, accu check

diaries…. MARs

Records

Appointment logs Lab reports, x-ray and other test

results Support plans Behavioral Incident reports Name some more Keep records of past medications

Records Keep a record of different doctors

the consumer has seen and for what reason

Keep a record of past medical issues

Medications that have been tried and did not work

Therapies

Health Information

Keep information current File properly, see chart of forms

used that states location Skin charts,etc…. Now that the charts and forms are

used Who should you share them with

On Going and Life Long Needs

Most consumers have ongoing needs for multiple services

These needs are not stable Many factors result in changes in

the mix and intensity of needs Underlying conditions Normal development Aging

Therapy Therapies are most effective when

started early Developmental processes,

especially during the first 5 years of life, build on each other and form the foundation for future development

Continuing Technology changes Life circumstance changes Relationship to family New assistive devices

Care Planning

Assessing needs Develop a treatment plan to meet those

needs Specify who will provide each plan

element Arrange for these services Follow-up to ensure that services were in

fact delivered and are they having the desired effect

Care Planning (cont) Periodic re-assessment of needs

and adjusting treatment plans accordingly

Aging processes bring about health changes

Our Part in this

Ongoing Each of us according to our

level of training and services we provide

Keep up with the information flow

Assessment (Continued) All providers have the training

necessary to meet needs Keep all health and functioning

information current Medication oversight in place

Knowing a Consumer’s Baseline

Health care for a consumer requires Knowing a consumer as an individual Knowing the “normal” for this consumer Knowing the medical complexity of this

individual (present and past health issues) Acquiring,if needed, the skill to meet this

consumer’s needs

Developmental Disabilities

1. Mental Retardation2. Autism3. Cerebral Palsy4. Spina Bifida5. Prader-Willi Syndrome

A Limited Overview Focusing on Primary Health Issues Focusing of Co-Health Issues Focusing on associated risk factors Focusing on care needed Focusing on records needed Focusing on the flow of information

Mental Retardation Cognitive functioning measured at

69 or less with onset before age 18 Life and health issues:

Communication, social/interpersonal skills

Self care, self direction, functional academic skills

Health and safety

Common Associations Maladaptive behavior and/or

psychiatric disorders Cerebral Palsy Seizure disorders Autism or autistic – like qualities

MR Associations continued Vision impairments Hearing impairments Attention deficit hyperactivity

disorder

Monitor MR Risk Factors Evaluate yearly--vision and hearing Mental and Behavioral issues Minimize significant changes in

caregivers and environment Regression and/ advances of skills

learned Oral and dental self care

Monitoring continued Personal Hygiene Speech and language progress Socialization Issues Medication needs

DOWN SYNDROME Mental Retardation Low muscle tone Small mouth Small ears, 75% with hearing loss

50-70% have chronic or frequent infections

Vision Impairments in 60% Frequent eye infections

Down Syndrome (cont.) Congenital heart disease (50%) Thyroid disease (15%) Cervical spine abnormality (10%) Seizures (5-10%) Obesity Psych and behavioral Problems Dementia in older years

Autism Spectrum Disorder A milder form– Asperger Syndrome Symptoms vary from person to

person Involves communication skills Social interactions are affected Involves Repetitive motions

Autism Associated Issues Sensory Impairment

Painfully oversensitive to certain sounds, textures, tastes and smells

May have impaired sensitivity to hot, cold, or pain

“ a light touch could make them cry out and yet may not feel a broken arm”

Autism Continued Cognitive Delay

Some areas of ability may be normal while others very weak

Varying degrees Higher functioning –Asperger

Syndrome

Autism Continued

Seizures Often begin in early childhood or

adolescence (generally get worse as they grow older)

Fragile X affects 2-5% Tuberous Sclerosis in 1-4% (genetic-

causes tumors to grow in the brain and other vital organs)

Autism Continued May also have hyperactivity

disorders May have Attention Problems Do not like “changes” The earlier the intervention the

better the response Many are able to live very

productive lives

Autism - Risks Self injurious behavior Compulsive behavior May not feel cold May not feel pain Various behavioral issues Seizures

Autism continued

Diet as therapy??? Speech Therapy Behavior Therapy Psych medications Seizure medications Safety needs

Spina Bifida Compromised spinal cord to

various degrees Myomeningocele creates severe

damage to the nerve pathways Severe damage is what we will

discuss

MylomeningoceleSpina Bifida

Spinal deformities Paralysis, decreased sensation or

muscle weakness below spinal opening Bowel dysfunction Bladder dysfunction Hydrocephalus Swallowing Problems Possible learning problems

Health Risks and Issues

Skin Breakdown Immobility Lack of sensation Use of orthotics

Bladder problems Urinary track infections Bladder may not empty becoming over filled May lead to Kidney failure and blood pressure issues

Health Risks continued Dysphagia-difficulty swallowing

Most often seen in childhood Sudden or slow to develop Immediate intervention is necessary

Health Risks continued Bowel incontinence from impaired

nerve function Diarrhea Constipation

Obesity- due to low levels of physical activity

Health Risks continued Respiratory Restrictive lung disease due to

progressive scoliosis (preventable?)

Latex Allergy Lack of weight bearing on bones Unbalanced weight management

Health needs Monitor skin Positioning needs Adaptive supports fit and used

correctly Monitor nerve functioning Bowel and Bladder Diet, weight, blood pressure Psych needs

Management Keep up with the flow of health

issues Keep medical records current

Be Proactive Pay attention to details—

Observation Timely intervention

Cerebral Palsy

Spastic Issues in 50% Mostly lower extremities May involve one arm and leg same

side Athetoid-weak floppy muscles in

20% Ataxic- weak floppy muscles in

10%

Cerebral Palsy A central nervous system disorder Non progressive Goals: promote optimal function,

maintain health, gain new skills and to anticipate-prevent-and treat complications

There may be other associated deficits

Health Issues- Spastic Greater if all limbs plus neck and trunk

are affected (quadraplegic) May have severe cognitive delay Seizures

Hemiplegic-mostly lower extremities Average cognition, may have seizures

Hemiplegic-one arm/leg same side Average cognition, may have seizures

Spastic Issues Muscle stiffness, jerks or spasms

Unusual pulls and strains on joints Contractures, Scoliosis, limb shortening

Skin breakdown May compromise function of lungs Seizures Eating difficulties - Poor Nutrition

GERD Ulcers, stomach emptying issues Excessive drooling, Aspiration

Spastic Issues Eye issues in 3 out of 5 (one eye pulls out) Dental Issues Hearing issues in 30-40%, Speech issues Bowel and bladder issues If one side of the body is affected may not

be aware of (sense) the position of the affected side Must look to see how a hand is pointing May act as though it is not there even if motor

disability is mild

Low muscle tone issues Affects balance, depth perception, and

gait Associated with abnormal, uncoordinated

and uncontrollable movements May develop Spasticity in late childhood

Speech affected Hearing may be affected Cognitive delay varies from low to severe Skin breakdown

CP –Low Tone Issues Bowel and Bladder issues

Chronic urinary track infections Oral motor involvement Constipation- diet, meds Respiratory issues Osteoporosis

Team Physical Therapy Speech Therapy Occupational Therapy Dietary/Nutrition therapy Neurologist, Gastroenterologist, PCP, May need Urologist……Psych Needs your support

Prader-Willi Syndrome Poor body temperature control Obesity

> BP, > Cholesterol, HD and stroke Impulsive and other behavior

issues Skin Picking

Cognitive delay, speech delay

Prader-Willi cont. Scoliosis Diabetes Pulmonary hyper or hypo tension Sleep apnea Osteoporosis ADD Premature death

Seizures Safety Issues Multiple medications

Multiple side effects Vagal Nerve Stimulator When does this become dangerous?

Back to back within a short period of time Last longer than 5 minutes

Seizures continued Does not return to normal within

the individuals normal pattern Unusual seizure patterns Turns blue, aspirates, injures self First Aid video

Thyroid Issues Hypo Sensitive to cold Constipation Hoarse voice Weight gain Aches and pains Depression Muscle weakness > cholesterol

Hyper Heat intolerance Diarrhea Anxious Insomnia,fatigue Tremors Low BP

Asthma Early Warning Signs

Sneezing Moodiness Headache Runny/stuffy nose Coughing Chin or throat

itches

Tiredness Dark circles under

eyes Poor exercise

tolerance Trouble sleeping

Asthma Symptoms Wheezing Coughing Shortness of breath Chest tightness Airways changes- narrow and fill

with a thick mucus

Severe Asthma Symptoms Severe coughing Wheezing SOB and chest

tightness Difficulty talking Walking causes

SOB

Nasal flaring Substernal

retractions Bluish color to lips Hunched

shoulders

Asthma Keep track of symptoms and when

they occur Know the warning signs Know when intervention is needed

for this consumer Medication Call doctor—call 911

Asthma May evolve into bronchitis or

pneumonia May aggravate other health issues May increase feeding difficulties If nebulizer meds ordered-get the

training

Psychiatric Co-Issues Subject to same psych illness as

anyone else but is 30-70% higher Anxiety Depression Bi-Polar Obsessive compulsive Thought disorders

Psych cont ADHD Other maladaptive behaviors

Sleep disorders Aggression Self-injurious Behavior Impulsiveness

Psych Issues A mismatch between needs,

abilities,and goals of a consumer with his/her environment

Frustration and confusion our consumers feel as a result of cognitive and physical challenges and limitations

Multi origins-biological, psych., and environment all factor together

Psych cont Find and understand the causes Evaluate medical, psychological,

and environmental inputs Physical, and lab work to rule out

infection and metabolic disorders, GERD?, Cardiac?, Orthopedic-arthritis

Medication side effects?

Treatment - Psych Medication (with) Behavior modification,

Psych/behavioral therapy Requires a collaborative approach Evolves a plan, consumer oriented

and approved, all supports

Hazards of Immobility Low BP, postural hypotension Heart works 30% harder May have blood clots Lowered muscle tone Low rate of metabolism Hinders respirations, poor coughs

Immobility Poor air exchange Eats less Body stress leads to slow stomach

emptying and diarrhea Osteoporosis Skin breakdown

Immobility Urinary track infections, kidney

stones Incontinence Dehydration Reduces consumer’s interaction

with environment > behavior issues