Department of Mental Retardation
Office of Quality Management
Living WELL
SPRING/SUMMER/2008
Welcome to the Spring/Summer 2008 issue of "Living Well", a publication of the Department of Mental Retardation, Office of Quality Management.   "Living Well" is published on a semi-annual basis and  features important information for individuals  and their supporters.  

   In this edition, you will find helpful information to assist people you support to enjoy spring and summer activities in a safe and healthy manner.   New to this edition is a “Did you Know” section.  This section will present information we’ve learned through the Incident Reporting System known as the Home and Community Services Information System (HCSIS) .  We trust that this information will be of practical use to you in your day to day work. 

"Living Well"  represents one component of DMR's continuing commitment to share information which will safeguard and improve the quality of lives of individuals.  Information and knowledge is a powerful tool.  We hope that this and future editions of "Living Well" will  be used effectively to enhance the health and well-being of individuals we support.

   We'd welcome your feedback and suggestions regarding content areas for future editions of the publication.  Please submit your suggestions to Sharon.Oxx@state.ma.us.  Thank you!

Elin Howe   Commissioner 
Department of Mental Retardation

A Mother’s View
By Helen S.

Moms worry about their children, no matter what their ages. Their son or daughter can be 5, 15 or over 30 years old and a mom’s hope is that he or she is always healthy, well nourished, loved and content. Moms of mentally retarded children living in residential homes supported by DMR may not be able to chat with their son or daughter and receive assurance that all is well and that they’re happy. Moms with non-verbal, 
mentally retarded children, like me, find this task impossible and we rely on their caregivers and direct care staff to be the eyes, ears and sometimes, the “moms”, for our children.

Now what makes our children different from others, you ask? Aren’t they the same as other 
children? Well, yes and no. Because they’re non-verbal and can’t express themselves in ways to make their needs clearly known to their caregivers or direct support staff, issues relating to their health may go unnoticed, unless someone pays close attention to repetitive signs or symptoms. Often, symptoms felt as pain or discomfort are labeled behavioral in nature and it’s not until the pain or discomfort has  become severe that it’s addressed, frequently requiring  a trip to the closest emergency room..

Did you know that there are signs and symptoms of health-related issues common to the mentally retarded person? The Department of Mental Retardation has posted a guide on
their website called “Guidelines for Observable Signs of Illness”, to assist caregivers and direct support staff on what to look for when a sign or a symptom appears.

For example, a lot of mentally retarded individuals suffer from constipation, but the symptoms of constipation are not always clear. My daughter’s direct care staff tracks and reports every 
bathroom visit made throughout the day, so it can be readily viewed and assessed by the next staff person who cares for her. Symptoms 
include:
•	Swollen belly
•	Belly tenderness
•	Increased gas, either flatus or burping                   
•	Grunting or straining during bowel movements
•	Less frequent bowel movements (few than usual pattern)
•	Stools that are hard, dry, and difficult to pass
•	Decreased appetite
•	Small amounts of liquid stool (liquid stool leaking around hard stool)
•	Rocking back and forth movement

DMR also identifies the causes of constipation and ways to prevent it. There are additional signs and symptoms of illnesses on their website, www.mass.gov/dmr. Click on “Guidelines for 
Observable Signs of Illness” for more information on constipation and other topics.

Share this information with other staff members and feel free to discuss it during training meetings. Talk about it with your supervisors. Get the word out that there is a guide available to use as a 
resource. No one wants to feel helpless during these situations. I dread those late night emergency room visits as much as you do with the long waiting times and clinicians not used to treating the mentally retarded. Knowledge is power and the life you save could be my daughter’s.

As a mom, I am so grateful for the care, the concern and the love that each and every one of you gives my daughter daily. Thank you for being informed. Thank you for being empowered. You are my heroes.
.BE SAFE OUT THERE
Summer is a time for fun and leisure activities.  As we all take advantage of warm weather and extended daylight hours, many recreational day trips are planned. Drivers, especially those transporting individuals with disabilities should make an extra effort to keep vehicles in good repair and gas tanks at least ½ full at all times to avoid emergencies. 

Here are some helpful tips when out on the road:
 
“The breakdown lane may be a safer place than the travel lane of a road”, “but it is not a safe place to be”, so writes Massachusetts State Police Major Kevin Kelly in a recent American Automobile Association newsletter. In the event that the unexpected happens, Major Kelly recommends:

•	Pulling over as far to the right as possible, away from the travel lane
•	If possible, pick a spot highly visible to oncoming traffic, NOT just over the crest of a hill, or on a blind curve.  It may be safer to pull on to the grass.
•	Park in a spot which allows room to get out, not on an overpass or bridge.
•	 If the breakdown is at night, stay in the vehicle under a streetlight
•	Put on your hazard lights and only if it is safe to do so, put up your hood. This  signals to others your distress
•	Use your cell phone and call 911 for any roadside 
      emergency.

•	One driver and one individual could probably safely exit the 
      vehicle and stay behind a guardrail or on the grass away from the vehicle
•	When one driver is transporting more than one individual it is usually safer to stay in the vehicle with seatbelts buckled, hazard lights on and  hood  elevated
•	On any road or highway, know when a “breakdown” lane
      is an active travel lane. In the Boston area, during the 
      morning and evening commuter rush  Routes 3, 93 , 95 and 128, 
      allow breakdown travel.  Posted signs show the hours

 If it is hot sunny day, remember to open the windows. If the windows do not open,  open the doors on the side of the vehicle away from the traffic (usually the right side)

DEHYDRATION
(the lack of sufficient fluid in the body)

Because many people are on certain medications requiring a stable blood level to maintain 
effectiveness (like seizure and psychotropic medications),  even mild dehydration can cause those blood levels to rise to dangerous levels, even toxic levels. This can create serious health consequences for the individual. Increasing fluid intake on hot days and offering them frequently can help prevent such an event.

     Some signs of dehydration include:
•	Decreased amount of urine                                              
•	Less frequent urination
•	Dry skin or cracked lips		
•	Sunken eyes
•	Less elasticity to the skin
•	Fever
•	Sleepiness
•	Headache
•	Increased heart rate
•	Strong, dark urine

REMEMBER: 
Popsicles, watermelon, cantaloupe, fruit salads and jello all contain a lot of water. 
And summertime is the perfect time to indulge in such treats.

As many of the individuals supported by staff may not  be able to express their increased need for fluids or are unable to access it independently, special effort must be made to anticipate this need by staff. 

RULE OF THUMB:

If a staff person is consuming a beverage, the person that they support should have one as well.

HEAT ILLNESSES
•	Heat Cramps occur after vigorous activities like running or playing tennis. Their signs are painful abdominal spasms and cramps in major muscles such as the legs and abdomen. Cramps subside with rest, cooling down and plenty of water.
•	Heat Exhaustion has many symptoms-fever, heavy sweating, fainting, rapid pulse, low blood pressure, clammy skin, ashen skin tone and nausea. Overexertion and not drinking enough water is the usual cause. To treat it, go indoors with a fan or air conditioning or to a shady spot, apply cool clothes,  immediately lie down with your legs elevated, loosen tight clothes, and drink cool water or sports beverages. 
•	Heat Stroke (Sunstroke) can be life-threatening  and requires immediate medical help. The symptoms include not only those associated with heat exhaustion, but also very rapid pulse and breathing, delirium,  unconsciousness, and lack of perspiration to cool the body. 

      Risk factors for heat stroke include:
•	Dehydration
•	Age over 65
•	Obesity
•	Consuming alcohol in hot weather
•	Having chronic heart or lung disease
•	Taking medications that interfere with the body’s heat-regulating system

To prevent a heat illness

•	Avoid direct sun from late morning until 4pm
•	Limit vigorous exercise or chores to early morning or late afternoon
•	Dress in light colored, loose-fitting clothes
•	Continually drink plenty of water or juice
•	Avoid caffeine or alcohol
•	Eat light meals

SUN EXPOSURE
Whenever you or the people you support are in the sun, you need to apply sunscreen. Buy a quality product rated at least SPF (Sun Protection Factor) 15 and  apply it liberally to all exposed skin at least 30-60 minutes before going out into the sun and frequently thereafter especially during peak sun hours or after sweating or swimming. Not only will this help prevent sunburn but skin cancer as well.  

Too much sun is also a risk factor for cataracts, so use sunglasses that block UVA and UVB ultraviolet rays. And don’t forget your wide brimmed hat

Remember,
Certain medications (like anticonvulsants, antipsychotics and high blood pressure medications) can cause people to burn more rapidly and more severely. 

WATER  SAFETY

Enjoying the water can be a special way to enjoy warm, summer days.  With some precautions and planning as outlined below, these activities can be the basis of happy memories of a fun summer.  

•	Assess each individual’s capabilities and needs when using different water venues, such as a pool, the ocean, or boating.  Ensure staff are knowledgeable of people’s capabilities and staff have water safety skills to support individuals while enjoying water activities.
•	Know each individual’s vulnerabilities and provide ongoing supervision to ensure everyone’s safety.  Remember, in sight supervision must be provided at all times to fully ensure safety.  
•	Before use, identify and utilize other available resources to ensure safety such as Lifeguard over sight of the beach or pool
•	Before use, identify any potential hazards and unique safeguards required for the specific water environments individuals will be using.  Potential hazards, for example, could include finding out about surf conditions to determine whether swimming in the ocean is safe, or knowing the depth of the water or possible underwater hazards when swimming at a lake or river. Safeguards would include the use of life jackets when boating.
•	Watch out for the “dangerous too’s”—too tired, too cold, too far from safety, too much sun, too much strenuous activity.
•	Pay attention to the weather and stop swimming at the first indication of bad weather.  Know what to do in an electrical storm.  Upon the first sign of thunder or lightning, leave the water, and do not re-enter the water until at least twenty minutes after the last indication that a storm is present.  
•	For pools at individuals’ homes, ensure that the pool is maintained safely and that safeguards are in place when the pool is temporarily or seasonally not in use.  For more information, refer to the DMR “Safeguards for Pools” issued on 1/8/97.
•	Even wading pools can pose a danger. Make sure the surfaces are not  slippery as people step into the pool. Apply nonskid bathtub decals to reduce this risk. Ensure that individuals are well-supervised when using the pool, and empty the wading pools when not in use. 

CREEPY CRAWLEES and OTHER PESTS

•	Bee, wasp or hornet stings can cause a medical emergency if one is allergic to them. You should be aware of those you are responsible for who have this problem and follow protocol if they should get stung. Most people, however, only experience a sharp pain that goes away after a few minutes. It is important to remove the stinger promptly: use a flat edge such as a credit card to scrape it from the welt, Wash the area and apply ice. Continue to monitor for signs of infection or increased inflammation.
•	Deer ticks are tiny insects that live in low brush and can spread Lyme disease in a small percentage of the people they bite. Use bug repellant with DEET whenever out in such areas to keep these pests and others away. Wear a long-sleeved shirt, long pants, socks and a hat if you are in tick country. When you get home, carefully check yourself and the person you support for ticks. And don’t panic! Generally, a Lyme disease carrying tick usually has to be attached for at least 24 hour s to spread the disease. Ticks can be difficult to kill so it is best to flush them whenever possible.
•	Mosquitoes: Avoid outdoor activities at dusk or dawn. That is when they are most active. Use a mosquito repellant. Most repellants are effective for many hours so there is no need to keep reapplying it. Wash it off carefully after going back inside. Wear light-colored clothing as mosquitoes are attracted to dark or bright colors.

If you would like further information on these topics or others, we suggest you visit the following website:

www.state.ma.us/dph
Never hesitate to take someone to the ER if you think an emergency exists or the HCP instructs you to do so

MAP REMINDER:

A HCP order is NOT needed for the use of

Bug Spray

Or

Sunscreen
Summer Dining

Fresh food, picnics and dining out are part of the great summertime experience.  When eating out, just remember:
•	Be aware of individuals’ allergies, dietary restrictions and needs, especially with the availability of more and different summertime and outdoor foods.
•	Ensure that family and friends are equally aware of the individuals’ allergies and restrictions.
•	Ensure that specific dietary plans are clear, and that any protocol in place for eating at home is also implemented in community settings.  For instance, ensure that the individuals’ food is of the appropriate consistency.
•	Remember that typical picnic and barbecue foods are not always optimal for all individuals, and come prepared with alternatives.  For instance, certain individuals may not be able to eat sandwiches, peanut butter, and/or hot dogs safely.
•	Keep cold foods cold and hot foods hot to avoid food poisoning from bacteria.
•	Keep track of any new reactions to new foods eaten- breaking out in hives when eating different fresh fruit, for instance.  
•	Encourage individuals to sit and dine, rather than to eat on the run.
•	Closely supervise individuals during meals.  Be alert to any signs of choking or difficulty eating, and know what to do in an emergency. 

Call 911 if the person is:  
•	Blue, can’t talk or make a sound or is not breathing (Attempt Heimlich Maneuver)
•	Having difficulty breathing
•	Looks very ill 

If you think there might be a problem with swallowing:
•	Document what you see
•	Tell other staff, the nurse, and your supervisor what you see
•	Stop the meal if the symptoms worsen and report it to the nurse or your supervisor according to your agency’s policy
•	Have the person eat at a slow pace
•	Tell the doctor what you see 

A common problem for many of the people that you work with is dysphagia (any problem a person may have with swallowing). Swallowing problems can lead to aspiration. Aspiration is a word that means food or fluids that should go into the stomach go into the lungs instead. There are several ways to tell if someone has dysphagia or aspiration problems. You may first notice these signs and symptoms when out and about.  Make sure that you report any of these signs and symptoms to your supervisor.  The person’s doctor will order the tests that they think will be best for each person.

Common signs of dysphagia and/or aspiration are:
•	Coughing before or after swallowing
•	Much drooling, especially during meals
•	Pocketing food inside the cheek
•	Choking on certain foods, for example white bread
•	Nose running or sneezing during dining
•	Trouble chewing
•	Trouble swallowing certain types of food or fluids
•	Taking a very long time to finish a meal
•	Getting tired during the meal
•	Refusals to eat certain foods or finish a meal
•	A complaint of feeling like something is caught in the throat
•	A gurgly voice during or after eating or drinking
•	Much throat clearing after a meal
•	Repeated episodes of choking, frequent colds, pneumonias or “allergies”
•	Unexplained weight loss
•	Unexplained fevers that come and go
•	Coughing when lying flat or sitting up quickly from a reclined position

Picnic Checklist

As you head out this summer to enjoy the warm weather and outdoor activities, here's a checklist to help you make sure you have everything you need to make it a safe outing for you and those you support.

 Sunscreen (SPF 30 or greater)

 Plenty of water or caffeine- free beverages 

 Lightweight clothing to cover up if very sunny

 Epipens (if ordered for anyone allergic to insects or food)

 First aid kit

 Equipment to allow food to be prepared to correct consistency (if applicable)

 Plenty of gas

 Portable ramp for access (if applicable)

 Information about site you will 
be visiting ( directions, bathroom access, parking, wc access, etc.)

 Towels if swimming planned	
 Bug spray

 Fully charged cell phone for emergencies

 Emergency fact sheets for all individuals

 Lots of ice and coolers to keep cold foods cold

 Hats to protect from the sun

 Food that can be safely maintained in hot weather (to prevent food poisoning)

 Enough staff to assure safety

 Adapted utensils (if applicable)

 Change of clothes for swimmers or those with toileting issues

 Blankets and chairs for seating
	
Did you know?

In HCSIS  the definition of “Unexpected Hospital Visit” is “an unplanned emergency visit to an acute care medical or psychiatric hospital for the purpose of evaluation and treatment of an immediate medical or  psychiatric concern”. According to information entered into HCSIS, between 9/1/06 and 8/31/07 there were 6,235 Unexpected Hospital Visits. This primary category would include four subcategories:  ER visit, Medical Hospitalization, Psychiatric Hospitalization and Emergency Crisis Team Evaluation. In this article we will talk about “ER Visits” and “Medical Hospitalizations”.

ER Visits
The top 5 reasons for ER visits were:
1.	Physical injuries (non-burn) 
2.	Seizures
3.	Pneumonia
4.	Urinary Tract Infection (UTI)
5.	Infection (systemic)

Medical Hospitalizations
The top 5 reasons for Medical Hospitalizations were:
1.	Pneumonia
2.	Urinary Tract Infection (UTI)
3.	Physical injury (non-burn)
4.	Seizures
5.	Acute cardiac problems or symptoms

What does this mean?
While the reasons people go to the ER and/or are admitted to the hospital are certainly appropriate, it also seems that some of those cases could have been treated by their Health Care Provider (HCP) in the office. So why weren’t they? There are several issues that we think may be the cause. They are:
•	Limited availability of HCP in a timely manner
•	Referral to ER by HCP for diagnostics and treatment rather than seeing in the office
•	Difficulty in recognizing early of signs and symptoms of illness by caregivers
•	Communication issues between caregivers in different programs that the individual attends
•	Limited clinical resources in programs

What can you do?
•	Be aware of what conditions to which the individual you work with may be prone
•	Be alert for even slight changes in an individual’s health and report them quickly. Trust you instincts about such matters. 
•	Be aware of changes in an individual’s ability to be safe in their environment and make adaptations as necessary or report the need for them
•	Make sure all assistive equipment is in good repair 
•	Make sure individuals always get their medications on time
•	Document what you see so that others will be aware as well
•	Never hesitate to take someone to the ER if you think an emergency exists or the HCP instructs you to do so

Urinary Tract Infection (UTI)
What is a Urinary Tract Infection?
The urinary tract is the system in the body that makes urine and carries it out of the body. It includes your bladder and kidneys and the tubes that connect them.  When bacteria or germs get into this system, they can cause an infection. Most UTIs are bladder infections (cystitis). A bladder infection is usually not serious if it is treated right away. If the bladder infection is not taken care of, it can spread to the kidneys. A kidney infection (nephritis) is serious and can cause permanent damage to the kidneys or lead to sepsis.  

How does someone get a UTI?
Bacteria that enter the urethra (the tube that carries urine from the 
bladder to outside the body) and travel up to the kidneys and bladder are the usual cause of UTIs. Bacteria that normally live in the large intestine and are present in feces (stool) are the most common cause of these infections. Sexual intercourse or personal care by others may also
 introduce bacteria into the urethra. Catheters, which are small, flexible tubes inserted into the bladder to allow urine to drain are also a common way that bacteria are introduced into the bladder. Sometimes, bacteria traveling through the blood or lymph system can cause UTIs. Kidney stones or an enlarged prostate in men, and problems with how the 
urinary tract works can cause UTIs by limiting the body’s ability to empty the bladder completely. 

What are the symptoms of a UTI?
•	Pain or burning when urinating
•	Urge to urinate frequently but only passing a small amount of urine
•	Dribbling (inability to control the release of urine)
•	Pain or a feeling of heaviness in the lower abdomen
•	Reddish or pinkish urine
•	Foul-smelling urine
•	Cloudy urine
•	Pain in the back, just below the rib cage, on one side of the body
•	Fever and chills, flu-like symptoms
•	Nausea and vomiting 

What should I do if I notice these symptoms?
•	Contact the person’s HCP immediately so that a test can be done on the urine to see if there is an infection and antibiotics can be prescribed
•	Finish antibiotics
•	Do a follow-up check on the urine after the person has completed the course of antibiotics to make sure it is gone
•	Drink or offer lots of water
•	Avoid caffeine and soda
•	Try drinking or offering cranberry juice

How can I prevent UTIs?

•	Drink or offer lots of fluids
•	Urinate often. Do not try to hold it.
•	Maintain careful catheter care and keep catheter and bag lower than the bladder at all times to prevent urine from going back into the bladder
•	Women should always wipe front to back after urination or a bowel movement
•	If someone wears briefs for incontinence, change them often and quickly after a BM as that can be an easy way for bacteria to enter the urethra
•	Avoid constipation as it can put pressure on the bladder and irritate it
•	Women should urinate immediately after intercourse