*Suzanne has just been admitted to your floor with the following stats:

• 37-years-old
• Non-verbal
• Rett Syndrome
• Dysphagia–honey thick liquids
• Profound mental retardation

What’s your first thought?
Long-Term Care Staff: “HELP! I’ve got to care for a patient TODAY with mental retardation and I don’t know anything about it!”

How often (if ever) have you cared for a person with mental retardation or a developmental disability? Were you uncomfortable? Did you fully understand his/her special needs; let alone how to address them? This article is a basic overview of how to deal with the special needs of this population from a nurse’s perspective.

WHAT IS MR/DD?
       MR/DD stands for mental retardation/ developmental disabilities. Mental retardation is a disability characterized by significant limitations both in functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This originates before age 18.² It affects three out of every 100 people¹ and comprises the largest group of individuals under the broad-spectrum umbrella called developmental disabilities. A developmental disability is a severe, chronic disability that originates in the developmental period before the age of 22 and is expected to last indefinitely.³ It can be attributed to a mental or a physical impairment and substantially limits the person’s functioning abilities. It is differentiated from other chronic disabilities by its age of origin and its significant impact on the developmental process. Schools use other terminology to describe children with developmental disabilities related to educational groupings, such as intellectual disability. The common factor of note is that these impairments dramatically change the person’s physical and mental development in a way that affects all aspects of their life. Self-care, mobility, self-direction, communication skills, financial decisions, and the ability to live independently may be affected by the individual’s intellectual or developmental disability.³

CAUSES
       Most individuals with mental retardation have congenital disabilities, meaning they were born with the disability, while others became disabled early in their lives. What happened? Think about the child who fell out of the baby carriage hitting his head on the pavement when he was small, the child who contracted meningitis, the shaken baby syndrome children, or those who have had a sledding or merry-go-round accident. Think about the child with cerebral palsy who requires assistance with walking or eating and therefore cannot attend routine school classes. Now think about your own child on prom night. A car accident can leave an 18-year old with a traumatic brain injury resulting in disabilities. That high school senior, because he is under the age of 22,would be eligible for services. One example I often use is Christopher Reeves. If he had been thrown from his horse before his 22^nd birthday, he would have been considered developmentally disabled. The child with cerebral palsy may have significant involvement in orthopedic, speech, and self care deficits, but may not have mental retardation, while a baby born with a very tiny genetic change may have an IQ of 3 but look virtually “normal.” The range of intellectual disabilities and their subsequent needs are vast. See page 16 for examples of individuals with mental retardation or developmental disabilities.
       It is important to note that the amount of assistance needed is unique to the individuals’ diagnoses and its developmental impact. A young person may need less care than an older person. Often the impact of the disabilities is not readily apparent. For example, certain types of frontal lobe injuries have no visible markings but often result in significant damage to the impulse control centers. These patients can walk, talk, and care for themselves but are notoriously poor decision makers requiring greater supervision.
       Three groups generally provide services for people with MR/DD. As children, the local public school district will provide free appropriate education, very often including speech therapy, PT, and OT. Long-term care needs are met through state Medicaid programs. These programs are usually facility based care through intermediate care facilities or a Medicaid waiver to support the person in their home. Day activities are offered in some areas through private agencies or county human service programs.

HEALTHCARE SYSTEM
       We, the healthcare providers, need to meet the requirements of those with special needs, yet our confidence waivers because facing these patients feels similar to an unfamiliar territory. We do not want to appear inept but these individuals can intimidate us. Our knowledge base of genetic changes and their implications is often limited to Down Syndrome, while there are more than 100 genetic causes of mental retardation.
       Maybe you find yourself saying, HELP! I’ve got to care for a patient TODAY with mental retardation and I don’t know anything about it! Below is some practical information to help you in this new situation:

UNDERSTAND THE CHALLENGES

Individual 1

       Many individuals with mental retardation or developmental disabilities have a limited capacity to understand new situations. They can become wary at the least, or terrified at the most.They can respond to those fears by being tactile defensive, refusing to cooperate, becoming verbally abusive, screaming, or becoming physically aggressive. These responses may be their only form of communication and to us may seem like an extreme response to the current situation.

Communication: Communication is the most affected skill in people with developmental disabilities. Not only is their speech limited, many times their understanding of the spoken world is also limited. They may have developed a system of noises and gestures to communicate with family.That system fails them in the healthcare setting.

Behaviors: Behaviors fall into two categories: ritualistic and inappropriate. Ritualistic behaviors may be attributed to specific syndromes. Chart 2 lists just a few of the defining criteria and behaviors specifically exhibited in correlation with specific syndromes. There are many other syndromes that affect our individuals. What we see as inappropriate behaviors are often learned ways to communicate or defend oneself from a world not understood. In some cases the behaviors are a reaction to boredom.

Pain issues: Identifying discomfort or pain levels in a verbal patient is always easier than with a nonverbal patient, but those with DD are especially challenging. Some individuals, especially those with a long history of seizure or psychotropic medication use, express little or no recognition of pain.

Syndromes & Characteristics Continued

Syndromes & Characteristics

       OUCH! *Albert closed the van door on his finger. Naturally he pulled away to release his trapped hand.The fingernail pulled off causing profuse bleeding. Shortly he began to show symptoms of shock but never expressed any sign or symptom of pain.
       *Garrett ran down the hall and fell, breaking his ankle. He ended up with a plate and eight screws in his ankle the next morning but never expressed any sign or symptom of pain.
       The pain signals never got through. Similar to a train that leaves its track, the trip is incomplete. The message just does not get through the nervous system to create alarm or a pain response.

Common medical issues to consider: Seizures are a common diagnosis in this population, and may be directly related to some syndromes. Long-term use of antiseizure or psychotropic medications may increase the potential for osteoporosis or hypothyroidism. Cerumen impactions (a build up of wax in the ears) are a common concern for individuals with mental retardation as well.

Dual diagnoses: Within the MR/DD population dual diagnoses refers to a combination of mental retardation and a psychiatric diagnosis. Interestingly, 30% to 35% of those with MR/DD also have a psychiatric co-existing condition. 4 It is sometimes difficult to determine psychiatric needs in an individual with mental retardation because they are unable to express their feelings or perceptions or to understand situations. Many are also non-verbal, making communication a challenge.

Guardianship: A person with MR/DD is considered to be able to make healthcare decisions until a judge removes that right, appointing a guardian. Many adults with MR/DD do not have guardians. Some have been identified and assessed to need a guardian, while others may not have encountered situations or professionals to help them determine their needs for guardianship. Still other individuals may have active advocates to help them make decisions, and may have resisted or avoided the formal assessments and legal proceedings necessary to provide a legally appointed guardian for them. Understanding the need for guardianship assessment can be intimidating to individuals with intellectual disabilities and/or their families.

       The above challenges can make assessments difficult to obtain for individuals with MR/DD.

       Long-Term Care Staff: “Ok, now I have a better understanding of mental retardation but how do I actually care for Suzanne?”

PRACTICAL HELP:
1.Always speak to the individual with MR/DD.This maintains the patient’s dignity, provides them with an opportunity to display their able form of communication and establishes a rapport allowing a bond to form. Once this bond is formed, the patient will be better able to trust you.
2. Use the caregiver or family member who accompanies the person with MR/DD to help build on the foundation of trust. They are usually the ones most familiar with the individual’s abilities and behavioral responses. They may be able to offer suggestions to minimize the trauma of the experience and any possible outbursts, aggression, or agitation.They may be able to encourage cooperation as well.
3. Allow sufficient time for the individual with MR/DD to process information. Use one-step directions like, “Suzanne, please sit down” is easier to comprehend than,“Suzanne, please hang up your coat on the hook over in the back right corner, take your shoes off, and sit down on the brown couch.” It is not uncommon for these individuals to require 5–10 seconds or more to process a simple one-step request and act upon it.
4.Take your time. Sudden movements can be frightening to individuals and can prompt unpleasant behaviors.
5. Explain what you are going to do well in advance.Allow time for the individual to process that information.
6. Offer liberal verbal praise and encouragement. Individuals frequently have teaching programs to address specific needs within their lives and verbal praise is an effective motivator. Everyone needs to know when he or she is doing a good job and the positive reinforcement is imperative to those with MR/DD.

       Long-Term Care Staff: “I’ll take my time, speak clearly and slowly allowing Suzanne time to process what I’ve said. I’ll ask her companion or staff person to help interpret what Suzanne is trying to communicate non-verbally and I’ll only give her one step directions. I’ll be sure I know who is able to make medical decisions. I want to speak directly to Suzanne, but what is the best way to communicate with her?”

Communication:We use many types of communication in our daily lives, but people with mental retardation may not have the ability to understand body language, inflection of voice, sarcasm or teasing, changes in facial expressions, or be able to speak verbally, so their ability to communicate is limited.
       For those that are “without a voice,” but have comprehension, there are many communication aids available. Communication boards that use magnetic letters or computers that “speak” after a message has been typed into it are examples of the various methods available. An individual who cannot speak, due to Cerebral Palsy may lack muscular control, but might be able to hit a large switch that turns on a light (much like a tap-light) that signals or communicates to his staff person. Communication books may use icons to express thoughts, requests or feelings.

Overview: Each nursing specialty has its own challenges and rewards. Communication and inappropriate behaviors are significant challenges for nurses working with individuals with mental retardation or developmental disabilities, but the rewards are far greater. Many of our facilities’ individuals have been with us for 20-30 years. They become part of our families and we know their needs well. There is a nursing specialty for those of us in this field; the Developmental Disabilities Nurses Association carries the specialty initials of CDDN (Certified Developmental Disabilities Nurse) for RNs and DDC (Developmental Disabilities Certified) for LPNs.
Summary: Suzanne’s needs may still seem foreign to you, but we hope you will be less intimidated or overwhelmed and that you will find this mini guide useful for those times when you are caring for an individual with mental retardation or developmental disabilities.

WHO WE ARE
       We serve individuals in a 90 bed ICF/MR, an Intermediate Care Facility for the Mentally Retarded in Mentor, Ohio. Joan Wolfert, RN, BSN is the Director of Nursing and Health Services Coordinator. Christine Pintchuk, RN is the Assistant Director of Nursing, also known as the Nursing Habilitation Manager, and a Certified Developmental Disabilities Nurse. Contact her at, chris.pintchuk@lakemrdd.org.