Author: IntellectAbility

“Approximately 30% of children with epilepsy have other developmental disabilities. In one study, children with mental retardation and cerebral palsy had a 35% chance of developing epilepsy, children with mental retardation alone had an 8% chance, and children with a brain injury occurring after birth had s 75% chance. In general, the risk of a child with a developmental disability experiencing an unprovoked seizure by age 5 is about 4 times greater than in the general population.” (2013 Epilepsy Foundation of Metropolitan New York) The occurrence of seizures has been reported to be as high as 50% during the lifetime of individuals with disabilities.

“Overall, epilepsy increases the risk of dying by a factor ranging between 1.6 and 3 times that of the background population (Forsgren et al. 2005). How much does epilepsy shorten life, on the average? It depends upon the type of epilepsy. A study in the UK of 564 people with epilepsy followed for 15 years (Gaitatzis et al. 2004) showed that people with epilepsy of unknown cause died an average of two years earlier, but those with a known underlying serious disease causing the epilepsy died an average of 10 years earlier.” One study which followed 245 children with persistent epilepsy for 40 years found that during that period 32 individuals died of causes related to epilepsy.

(Web-MD Epilepsy Health Center)

Epilepsy-related causes of death include:

• Deaths related to the underlying illness causing the epilepsy.
• Deaths from conditions related to seizures, such as depression (suicide).
• Trauma or drowning as the result of seizure activity.
• Sudden Unexplained Death in Epilepsy (SUDEP)
• Status epilepticus

(Epilepsy.com Spotlight Newsletter, August, 2010)

Of the over 40 different seizure types that have been identified, many are due to conditions such as brain tumors or degenerative neurological conditions which may ultimately lead to the death of the individual. Death can also occur due to co-morbid conditions, which exist as part of the same issue or syndrome but do not directly cause seizure activity.

…the risk of a child with a developmental disability experiencing an unprovoked seizure by age 5 is about 4 times greater than in the general population.

Sudden Unexplained Death in Epilepsy, or SUDEP, is most common in young adults ages 20 to 50. Death occurs from cardiac or respiratory failure due to unknown causes and is most likely to be seen in individuals with poorly controlled generalized tonic clonic seizures and seizures which occur during sleep. Young age when seizure activity began, poor compliance with anti-epileptic medications and use of alcohol are other common factors in these deaths. SUDEP does not necessarily occur during a seizure or in conjunction with recent seizure activity.

Status epilepticus is generally defined as prolonged seizure activity (for 30 minutes or longer) but can also include seizures that occur back-to-back with no post-ictal recovery or seizures with a markedly prolonged post-ictal period. Status epilepticus can occur with any seizure type but is most dangerous with generalized tonic clonic seizures due to swelling that can occur at the base of the brain. In the U.S. there are approximately 50,000 deaths due to status epileptics each year. Death frequently occurs due to fatal disruption of brain physiology or disruption of normal cardiac rhythm. During their lifetime approximately 15% of individuals with epilepsy will experience status epilepticus.

Seizure Rating Information for HRST Users

The HRST assigns enhanced risk to individuals with seizure activity based on the frequency and/or severity of seizures. As a screening instrument the HRST does not differentiate between types of seizures, instead giving equal scrutiny to all seizure types and allowing the individual’s support team and physicians to make final decisions regarding necessary support and treatment.

We do, however, make several recommendations in the Evaluations /Service and Training Considerations for addressing many of the factors which may lead to deaths due to seizures. These include making sure that the individual has access to the services of a Neurologist at appropriate intervals and that their primary care provider is informed of the extent to which seizure activity disrupts their lives. Pharmacists’ services are also often sought related to safety issues and potential side effects of medications.

Many causes of seizure-related deaths are issues that could be reduced or eliminated by enhanced support in the home and work environments. All care providers, whether they are paid personnel or family members, should have basic instruction on seizure types and how to identify and document seizure activity as well as information about safe and appropriate medication administration. Training should also include information about identifying signs that seizure activity is worsening. These include increased seizure intensity, change in seizure signs and prolonged seizure times, even when they do not qualify as status epilepticus. Finally, instruction is needed about how to recognize and respond to seizures and seizure emergency and unwanted effects of medications and how and to whom to report problems. 

Eating is one of life’s greatest pleasures. Is there a major occasion or event in almost any culture that doesn’t include a special meal? Food nourishes both our bodies and our souls, but eating can also lead to a host of problems, including fatal ones. This is a complex and extensive topic. In writing about it and trying to even begin to do some justice to the subject we discovered that there was far too much material to hold the interest of even the most patient reader. This month’s newsletter will cover swallowing difficulties and other mechanical or anatomical issues that can cause problems with eating.

The human body has one or two questionable anatomical design issues. In order to complete a successful swallow food must pass over the opening to the airway (trachea) to reach the tube that conducts food from the mouth to the stomach (esophagus). A small flap, the epiglottis, normally folds down to cover the trachea and protects it from inhalation of foreign material, or aspiration. Successful swallowing also depends on good alignment of the head and neck (Sit up straight, ears over your shoulders, please). There must also be a functioning nervous system and good muscular control of the jaws, tongue and small muscles of the throat for the swallowing mechanism to work as it should.A full set of teeth that are intact and pain free are also helpful, though not strictly necessary.

Dysphagia is derived from the Greek words for bad or disordered eating though the term generally refers to issues that occur during one of the three phases of swallowing. There are many causes and presentations of dysphagia.

Simply talking or laughing while eating can cause food to “go down the wrong pipe”, as Grandma used to say. The inability or unwillingness to sit up to eat can interfere with the essential role that gravity plays in assisting the safe passage of food. Physical deformity or poor posture are often seen in the elderly, individuals with disabilities as well as certain teenagers. This can interfere with the alignment of the trachea and esophagus or the esophagus and the stomach. This can also impair the function of the smaller muscles of the throat that are involved in swallowing. Poor muscular control due to disease or medication side-effects can also contribute to problems with the basic process of a normal swallow. Many medications dry up saliva production making it difficult to lubricate food for a smooth trip to the stomach. Dental problems or the absence of teeth can make it difficult or painful to chew food to the proper consistency.

Mechanical changes in the esophagus can also result in dysphagia. Individuals may be born with an abnormally small esophagus. It may also be damaged or restricted by growths of the organ itself or within the chest such as the lungs, heart, vessels, cervical (ofthe neck) spine, or local lymph nodes. Damage to the esophagus can occur due to long-term exposure to stomach contents if the person experiences reflux. Ingestion of items that damage the esophagus through temperature-related or chemical burns may also cause scarring that restricts the esophagus.

An individual with dysphagia or those assisting in his/her care may be unaware that they suffer from the condition. Signs of dysphagia may include:

• Difficulty controlling items (food or saliva) in the mouth.
• Difficulty beginning a swallow.
• Coughing or choking while eating.
• Wet or gurgly sounding voice during or after eating.
• Using unusual postures while eating such as gulping with the head back (gravity assisted swallow).
• Passage of food or fluids through the nose while eating.
• Complaint of pain or other swallowing difficulty.

Individuals with long term dysphagia my experience frequent bouts of pneumonia, unexplained weight loss and/or meal refusals. One trick used by speech pathologists to detect silent or discrete aspiration is to attach a pulse oxymeter (which measures oxygen content of the blood) to the person’s finger during meals. Individuals who aspirate while eating often experience a decrease in their oxygen levels at this time. This is a daunting list and it may be frightening to non-medically trained caretakers to feel they must recognize and address these issues. But like many problems it becomes simpler to address when taken one piece at a time.

The first individuals to be notified are those with immediate contact with the individual. These would include case managers, nurses or the person’s primary care provider.

First and foremost, train individuals or their caretakers to recognize and report the signs. “Jamie’s always done that and it’s never been a problem,” is a dangerous way of thinking. So is the inability to recognize changes in the person’s eating habits that may be related to a developing problem.

Second, who should be notified and what can be done? This piece has been exclusively about identifying the existence of the problem and less about treatment, which should always be handled by trained professionals. The first individuals to be notified are those with immediate contact with the individual. These would include case managers, nurses or the person’s primary care provider. With significant problems the services of a speech pathologist or gastroenterologist is often needed.

Third, when professionals make recommendations or write orders, follow them scrupulously. Issues with eating can easily and rapidly lead to death with a single slip. If an altered texture diet is ordered train caregivers how to provide it. If the individual has a feeding tube and orders for no food by mouth (or NPO), make sure nobody sneaks in food where it doesn’t belong. This is not an area with a wide margin for error.

Fourth, people with swallowing issues can often improve and return to eating by mouth or to consuming foods and fluids with more challenging consistencies. Return to a more normal style of eating whenever possible should always be part of the person’s personal goals. It is not always possible but it is always desirable and worth the effort. After all, who wants to miss out on a nice big, gooey piece of birthday cake if they don’t have to?

Next month we will look at behavioral challenges as they relate to eating. 

Behavioral issues with eating are among the most common causes of death in individuals with IDD and are also some of the most difficult to change. Statistics and research specific to this issue are quite difficult to track down, but in piecing together information from different sources it is estimated that as many as 25% of accidental deaths in this population occur as the result of unsafe eating patterns that resulted in choking.1 Statistics regarding behavior-related choking incidents and other eating-related injurious behaviors resulting in hospitalization, illness or injures requiring medical treatment are even more difficult to locate. Presumably these are even higher than the number of deaths. This is clearly an issue that needs to be addressed in order to protect the safety of individuals we serve to help them thrive in less restrictive environments.

Dangerous eating behaviors include eating too fast, taking bites that are too large, stuffing too much food into the mouth, intentionally ingesting non-food items (PICA) or food items that are unfit for consumption. Other behaviorally-driven eating concerns include individuals eating spoiled or otherwise contaminated food from garbage cans, dumpsters, off sidewalks (loaded with ants), foods that are frozen or boiling hot or food consumed in amounts far too large for a normal stomach to hold.

Recognize and acknowledge that there is a problem: If a situation looks dangerous it probably is.

Dangerous behavior-related eating patterns may be seen at a higher frequency in individuals with Prader Willi Syndrome or autism, among others. They can also be learned patterns and are frequently associated with a history of living in large, congregate-care facilities, where residents might have been required to scarf down their food very quickly to avoid losing it to their peers. Questionable eating habits that were not addressed earlier in life can become increasingly dangerous as individuals begin to have age-related difficulties with swallowing.

Unsafe eating patterns are some of the most difficult behavioral issues to correct. In fact, many individuals will never be free of the need for support or supervision when it comes to eating. There are several steps that must be taken in order to ensure the safety of individuals with these types of challenges.

• Recognize and acknowledge that there is a problem: If a situation looks dangerous it probably is. This sounds overly-simplistic, but some pretty horrific eating patterns persist without intervention with family members or support staff standing by saying, “Yeah, it’s pretty out there, but he’s always done it and doesn’t seem to have a problem.” Words to cringe by!
• Train and educate: Caretakers, whether they be support staff or family members need to have information and skills to recognize when there is a problem. Some of the signs of an obstructed airway are subtle. They can include swallowing several times after taking a bite, excess salivation, food coming back through the mouth or nose, swallowing several sips of liquid after a bite or refusing to eat.
• Be vigilant about interventions: Not sometimes, not usually…ALWAYS. There are many ways to address behavioral issues with eating. Many of them require enhanced supervision or support around mealtimes or in settings where the person may have access to unsafe items. In some cases access to unsafe items needs to be restricted. In many cases where death or injury has occurred interventions were discussed but not followed up on, relaxed in an unusual setting or circumstance or followed by one provider but not another. New staff members who work with individuals with identified eating challenges need to be fully trained BEFORE assuming responsibility for their care. The real danger of these issues is that it only takes a brief moment for disaster to occur.

This is a difficult problem to deal with and one that is virtually impossible to eliminate. With continuous, appropriate vigilance it can be supported, allowing people to continue to enjoy the many benefits of living in less restrictive settings.

Over the next several months we will be taking an in-depth look at each of the 22 items on the HRST. The first major category is Functional Status, which deals with those activities each of us performs (and often takes for granted) on a daily basis. This broader category contains five separate items: Eating, Ambulation, Transfer, Toileting, and Clinical Issues Affecting Daily Life. We will cover each of those individually in the coming issues, but I feel it is important to give some background on the subject before we begin.

There are two very good reasons that issues with functional status appear on an instrument that concerns itself with risk identification and management. First, in their most extreme forms, these issues indicate extreme needs for support to prevent severe injury or even loss of life. Individuals requiring the most assistance with eating mobility also have demonstrably higher death rates. Incontinence and the need for catheterization carry significant risks for infection, skin breakdown and disorders of the urinary tract and bowel. Lastly, the degree to which a person’s health or behavioral issues impact their life has a direct impact upon their ability to participate in expected daily activities such as school, work or social activities.

One of the biggest disservices we do for individuals with special needs is to assume that health and wellness issues cannot be improved…

Secondly, loss of functional skills is often the first noticeable sign of declining health status. Examples of patterns which should raise red flags include:

• Going from eating independently to requiring direct assistance, an altered texture diet or a feeding tube.
• Going from being able to walk and move from one position to another to needing supervisory support, a wheelchair, mechanical seating support or lift equipment.
• Progressive loss of toileting skills involving hygiene, continence or requiring assistance to empty the bladder.
• Increasing numbers of days where usual activities are impacted by the need to address clinical issues.

One of the biggest disservices we do for individuals with special needs is to assume that health and wellness issues cannot be improved or, even worse, that progressive loss of skills over time is “normal” Deterioration, in spite of the most skilled intervention, may well be inevitable. It should never be regarded as normal. It is always a sign that something is going on. In many cases loss of skill is an early opportunity to begin looking for and correcting root cause. In those with long-standing functional deficits there are often opportunities to provide interventions that support the person more successfully around their issues or improve skills to lessen the risk.

Next month’s article will discuss issues with Eating, how they can negatively impact a person’s health and quality of life and how even serious issues can be addressed in ways that reduce the potential for unwanted health consequence. 

Improving Quality of Life for those with Intellectual and Developmental Disabilities

Primary Functions of the HRST and SIS

Since the last newsletter we received a lot of interest regarding the use of the HRST and the SIS. We have included some information below about how these two tools work together.

HRST

The HRST is a reliable web-based rating instrument developed to screen for health risks associated with a wide variety of disabilities, including developmental disabilities, physical disabilities, disabilities associated with aging, and many other conditions, which specifically affect systems of the body and the person’s ability to engage in functional activities. It is designed to primarily detect destabilization EARLY and PREVENT preventable illness and even death. It has the ability to detect health risk that can lead to illness and death. It accomplishes this by having the interviewer rate 22 rating items that span over 5 categories: Functional Status, Behavior, Physiological, Safety, and Frequency of Services. Once scoring is complete the HRST produces an overall Health Care Level (HCL) that corresponds to the person’s risk level. The HRST also produces a set of Considerations that assist the team in identifying other professional services and training that may be needed for the person based off the scoring of the 22 items. The HRST has been shown to reduce morbidity, reduce costs related to service delivery, lead to more accurate parallel of supports/services to needs of the person, better staffing alignment based off of identified needs, greater identification of at-risk individuals, and improved quality of life for the person due to better overall health.

SIS

Developed, tested, and normed by the American Association on Intellectual and Developmental Disabilities (AAIDD), the Supports Intensity Scale is a unique supports identifying tool for ages 16 and older. It primarily seeks to assess and measure the support needs for persons with intellectual and developmental disabilities to engage in a given activity at the same level of involvement as anyone without a disability of relative age in his or her community (also defined as, Success). The SIS covers a number of life activities some of which have historically been unassociated with, or participated in, by people with disabilities. The interviewer is tasked with exploring a number of activities in the sections of Home Living, Community Living, Lifelong Learning, Employment, Health and Safety, Social and Protection/Advocacy. The interviewer then works with the team to identify what Type of Support, Frequencyof Support, and Daily Support Time would be needed to ensure success. The majority of the tool is scored in this manner. The SIS helps identify the supports needed for maximum contribution in everyday tasks. It also addresses stereotypical norms by refocusing, not on the deficits of the person, but rather on accurate supports to engage in life like others do.

Using HRST and SIS

Due to the intended nature and purpose of the HRST and the SIS, users may find that these two tools work well together in a number of ways. Each tool takes a different approach when evaluating the person.

Both tools can be used to:

• Develop Individualized Support Plans.
• Allocate fiscal resources based of identified risk and support level.
• Allocate staff and personnel.
• Qualify for advanced funding and supports.
• Identify quality of life dynamics.
• Trend data.
• Assist in continuity of care.
• Aid in transition efforts from higher levels of care.

The first person I met who had severe cerebral palsy also had a Ph.D. A friend and colleague of my mother’s, she was the Director of Special Programs for individuals with complex sensorimotor issues at Glenwood State Hospital School in Southwest Iowa. Visits to her home, where she lived with the assistance of a personal aide, were pleasant interludes where the adults conversed over coffee and my brother and I played in the shady backyard. They were an integral part of my definition of a normal childhood.

Those who became involved in the field by the mid 1960’s (yes, there are still several out there) did so at an extraordinary time in history as it relates to people with disabilities. It was the tail-end of the time when families automatically handed “hopelessly crippled” over children at birth, many to see them only a few times a year, if ever. It was a time when individuals in custodial settings, including prisons, were literally regarded by the system as legally dead in terms of their personal rights. In other words, they had none. Over the past fifty or so years we have been treated to a front-row seat at the growth spurt in our understanding and treatment of people with specialized needs.

In 1965 a person with Down Syndrome could expect to live only until their mid-twenties, 75% of individuals with cerebral palsy were also diagnosed as having an intellectual disability, as opposed to 25% today. If you had hit the average citizen with the term “mainstreaming,” they would probably have thought you were referring to an innovation in the field of civil engineering. In 2014 people across a wide range of disabilities can expect to live a life span equal to or approaching that of the population at large. They can expect to be college graduates, business owners and valuable members of their extended communities.

HRS Inc’s stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point.

Technology and medicine have made great strides in the past fifty years. Access to education and employment are greatly improved and more people are remaining with families, guardians or living independently with supports. Wonderful things, all of them, but we face continued and growing concerns over community acceptance and access to needed services. It therefore begs the question, how do we keep what we’ve gained and continue to progress? The answer to these questions will never be simple but they can be distilled down to some very basic elements: Reduce the need for intervention when and wherever possible as well as support and promote things that are already working.

Our friend from the early days in Southwest Iowa came to share our common path by design, not by accident. She had a mother who loved and believed in her at a time when her family, her community and virtually every health care professional probably considered her, well, let’s be kind and say…unique. She made every possible resource available to her daughter against great odds and she, her daughter and the special needs community were rewarded by her vision and perseverance. In many ways we are and will continue to face increasing challenges today and into the future. Funds are dwindling and there is still much ground to be gained in enjoying access to the wide world. If it could be done in the 50’s and 60’s it can certainly be done now. How we choose to do so will continue to define the path of this community.

Building a Better Future

The first person I met who had severe cerebral palsy also had a Ph.D. A friend and colleague of my mother’s, she was the Director of Special Programs for individuals with complex sensorimotor issues at Glenwood State Hospital School in Southwest Iowa. Visits to her home, where she lived with the assistance of a personal aide, were pleasant interludes where the adults conversed over coffee and my brother and I played in the shady backyard. They were an integral part of my definition of a normal childhood.

Those who became involved in the field by the mid 1960’s (yes, there are still several out there) did so at an extraordinary time in history as it relates to people with disabilities. It was the tail-end of the time when families automatically handed “hopelessly crippled” over children at birth, many to see them only a few times a year, if ever. It was a time when individuals in custodial settings, including prisons, were literally regarded by the system as legally dead in terms of their personal rights. In other words, they had none. Over the past fifty or so years we have been treated to a front-row seat at the growth spurt in our understanding and treatment of people with specialized needs.

In 1965 a person with Down Syndrome could expect to live only until their mid-twenties, 75% of individuals with cerebral palsy were also diagnosed as having an intellectual disability, as opposed to 25% today. If you had hit the average citizen with the term “mainstreaming,” they would probably have thought you were referring to an innovation in the field of civil engineering. In 2014 people across a wide range of disabilities can expect to live a life span equal to or approaching that of the population at large. They can expect to be college graduates, business owners and valuable members of their extended communities.

HRS Inc’s stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point.

Technology and medicine have made great strides in the past fifty years. Access to education and employment are greatly improved and more people are remaining with families, guardians or living independently with supports. Wonderful things, all of them, but we face continued and growing concerns over community acceptance and access to needed services. It therefore begs the question, how do we keep what we’ve gained and continue to progress? The answer to these questions will never be simple but they can be distilled down to some very basic elements: Reduce the need for intervention when and wherever possible as well as support and promote things that are already working.

Our friend from the early days in Southwest Iowa came to share our common path by design, not by accident. She had a mother who loved and believed in her at a time when her family, her community and virtually every health care professional probably considered her, well, let’s be kind and say…unique. She made every possible resource available to her daughter against great odds and she, her daughter and the special needs community were rewarded by her vision and perseverance. In many ways we are and will continue to face increasing challenges today and into the future. Funds are dwindling and there is still much ground to be gained in enjoying access to the wide world. If it could be done in the 50’s and 60’s it can certainly be done now. How we choose to do so will continue to define the path of this community.

Building a Better Future

The next several articles in future newsletters will deal with each of the areas of the HRST and discuss how they can be used to identify both areas of need and non-need. “Normal” is such a loaded word, but every person in the world is afflicted with it invarying amounts and in one form or another. HRS Inc’s stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point. The unspoken opposite side of that is that we don’t hassle people when they don’t need it. Unnecessary interventions can be an expensive nuisance. They often prevent the public at large from seeing that they share more similarities than differences with individuals with special needs. They can also prevent gains in an individual’s personal growth and development. Nobody who works in the supportive care field and most compassionate humans do not want to see anyone go without the things they genuinely need. With good advocacy and the proper supports it doesn’t have to happen.

The first person I met who had severe cerebral palsy also had a Ph.D. A friend and colleague of my mother’s, she was the Director of Special Programs for individuals with complex sensorimotor issues at Glenwood State Hospital School in Southwest Iowa. Visits to her home, where she lived with the assistance of a personal aide, were pleasant interludes where the adults conversed over coffee and my brother and I played in the shady backyard. They were an integral part of my definition of a normal childhood.

Those who became involved in the field by the mid 1960’s (yes, there are still several out there) did so at an extraordinary time in history as it relates to people with disabilities. It was the tail-end of the time when families automatically handed “hopelessly crippled” over children at birth, many to see them only a few times a year, if ever. It was a time when individuals in custodial settings, including prisons, were literally regarded by the system as legally dead in terms of their personal rights. In other words, they had none. Over the past fifty or so years we have been treated to a front-row seat at the growth spurt in our understanding and treatment of people with specialized needs.

In 1965 a person with Down Syndrome could expect to live only until their mid-twenties, 75% of individuals with cerebral palsy were also diagnosed as having an intellectual disability, as opposed to 25% today. If you had hit the average citizen with the term “mainstreaming,” they would probably have thought you were referring to an innovation in the field of civil engineering. In 2014 people across a wide range of disabilities can expect to live a life span equal to or approaching that of the population at large. They can expect to be college graduates, business owners and valuable members of their extended communities.

HRS Inc’s stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point.

Technology and medicine have made great strides in the past fifty years. Access to education and employment are greatly improved and more people are remaining with families, guardians or living independently with supports. Wonderful things, all of them, but we face continued and growing concerns over community acceptance and access to needed services. It therefore begs the question, how do we keep what we’ve gained and continue to progress? The answer to these questions will never be simple but they can be distilled down to some very basic elements: Reduce the need for intervention when and wherever possible as well as support and promote things that are already working.

Our friend from the early days in Southwest Iowa came to share our common path by design, not by accident. She had a mother who loved and believed in her at a time when her family, her community and virtually every health care professional probably considered her, well, let’s be kind and say…unique. She made every possible resource available to her daughter against great odds and she, her daughter and the special needs community were rewarded by her vision and perseverance. In many ways we are and will continue to face increasing challenges today and into the future. Funds are dwindling and there is still much ground to be gained in enjoying access to the wide world. If it could be done in the 50’s and 60’s it can certainly be done now. How we choose to do so will continue to define the path of this community.

Building a Better Future

The next several articles in future newsletters will deal with each of the areas of the HRST and discuss how they can be used to identify both areas of need and non-need. “Normal” is such a loaded word, but every person in the world is afflicted with it invarying amounts and in one form or another. HRS Inc’s stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point. The unspoken opposite side of that is that we don’t hassle people when they don’t need it. Unnecessary interventions can be an expensive nuisance. They often prevent the public at large from seeing that they share more similarities than differences with individuals with special needs. They can also prevent gains in an individual’s personal growth and development. Nobody who works in the supportive care field and most compassionate humans do not want to see anyone go without the things they genuinely need. With good advocacy and the proper supports it doesn’t have to happen.

The first person I met who had severe cerebral palsy also had a Ph.D. A friend and colleague of my mother’s, she was the Director of Special Programs for individuals with complex sensorimotor issues at Glenwood State Hospital School in Southwest Iowa. Visits to her home, where she lived with the assistance of a personal aide, were pleasant interludes where the adults conversed over coffee and my brother and I played in the shady backyard. They were an integral part of my definition of a normal childhood.

Those who became involved in the field by the mid 1960’s (yes, there are still several out there) did so at an extraordinary time in history as it relates to people with disabilities. It was the tail-end of the time when families automatically handed “hopelessly crippled” over children at birth, many to see them only a few times a year, if ever. It was a time when individuals in custodial settings, including prisons, were literally regarded by the system as legally dead in terms of their personal rights. In other words, they had none. Over the past fifty or so years we have been treated to a front-row seat at the growth spurt in our understanding and treatment of people with specialized needs.

In 1965 a person with Down Syndrome could expect to live only until their mid-twenties, 75% of individuals with cerebral palsy were also diagnosed as having an intellectual disability, as opposed to 25% today. If you had hit the average citizen with the term “mainstreaming,” they would probably have thought you were referring to an innovation in the field of civil engineering. In 2014 people across a wide range of disabilities can expect to live a life span equal to or approaching that of the population at large. They can expect to be college graduates, business owners and valuable members of their extended communities.

HRS Inc’s stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point.

Technology and medicine have made great strides in the past fifty years. Access to education and employment are greatly improved and more people are remaining with families, guardians or living independently with supports. Wonderful things, all of them, but we face continued and growing concerns over community acceptance and access to needed services. It therefore begs the question, how do we keep what we’ve gained and continue to progress? The answer to these questions will never be simple but they can be distilled down to some very basic elements: Reduce the need for intervention when and wherever possible as well as support and promote things that are already working.

Our friend from the early days in Southwest Iowa came to share our common path by design, not by accident. She had a mother who loved and believed in her at a time when her family, her community and virtually every health care professional probably considered her, well, let’s be kind and say…unique. She made every possible resource available to her daughter against great odds and she, her daughter and the special needs community were rewarded by her vision and perseverance. In many ways we are and will continue to face increasing challenges today and into the future. Funds are dwindling and there is still much ground to be gained in enjoying access to the wide world. If it could be done in the 50’s and 60’s it can certainly be done now. How we choose to do so will continue to define the path of this community.

Building a Better Future

The next several articles in future newsletters will deal with each of the areas of the HRST and discuss how they can be used to identify both areas of need and non-need. “Normal” is such a loaded word, but every person in the world is afflicted with it invarying amounts and in one form or another. HRS Inc’s stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point. The unspoken opposite side of that is that we don’t hassle people when they don’t need it. Unnecessary interventions can be an expensive nuisance. They often prevent the public at large from seeing that they share more similarities than differences with individuals with special needs. They can also prevent gains in an individual’s personal growth and development. Nobody who works in the supportive care field and most compassionate humans do not want to see anyone go without the things they genuinely need. With good advocacy and the proper supports it doesn’t have to happen.

The first person I met who had severe cerebral palsy also had a Ph.D. A friend and colleague of my mother’s, she was the Director of Special Programs for individuals with complex sensorimotor issues at Glenwood State Hospital School in Southwest Iowa. Visits to her home, where she lived with the assistance of a personal aide, were pleasant interludes where the adults conversed over coffee and my brother and I played in the shady backyard. They were an integral part of my definition of a normal childhood.

Those who became involved in the field by the mid 1960’s (yes, there are still several out there) did so at an extraordinary time in history as it relates to people with disabilities. It was the tail-end of the time when families automatically handed “hopelessly crippled” over children at birth, many to see them only a few times a year, if ever. It was a time when individuals in custodial settings, including prisons, were literally regarded by the system as legally dead in terms of their personal rights. In other words, they had none. Over the past fifty or so years we have been treated to a front-row seat at the growth spurt in our understanding and treatment of people with specialized needs.

In 1965 a person with Down Syndrome could expect to live only until their mid-twenties, 75% of individuals with cerebral palsy were also diagnosed as having an intellectual disability, as opposed to 25% today. If you had hit the average citizen with the term “mainstreaming,” they would probably have thought you were referring to an innovation in the field of civil engineering. In 2014 people across a wide range of disabilities can expect to live a life span equal to or approaching that of the population at large. They can expect to be college graduates, business owners and valuable members of their extended communities.

HRS Inc’s stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point.

Technology and medicine have made great strides in the past fifty years. Access to education and employment are greatly improved and more people are remaining with families, guardians or living independently with supports. Wonderful things, all of them, but we face continued and growing concerns over community acceptance and access to needed services. It therefore begs the question, how do we keep what we’ve gained and continue to progress? The answer to these questions will never be simple but they can be distilled down to some very basic elements: Reduce the need for intervention when and wherever possible as well as support and promote things that are already working.

Our friend from the early days in Southwest Iowa came to share our common path by design, not by accident. She had a mother who loved and believed in her at a time when her family, her community and virtually every health care professional probably considered her, well, let’s be kind and say…unique. She made every possible resource available to her daughter against great odds and she, her daughter and the special needs community were rewarded by her vision and perseverance. In many ways we are and will continue to face increasing challenges today and into the future. Funds are dwindling and there is still much ground to be gained in enjoying access to the wide world. If it could be done in the 50’s and 60’s it can certainly be done now. How we choose to do so will continue to define the path of this community.

Building a Better Future

The next several articles in future newsletters will deal with each of the areas of the HRST and discuss how they can be used to identify both areas of need and non-need. “Normal” is such a loaded word, but every person in the world is afflicted with it invarying amounts and in one form or another. HRS Inc’s stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point. The unspoken opposite side of that is that we don’t hassle people when they don’t need it. Unnecessary interventions can be an expensive nuisance. They often prevent the public at large from seeing that they share more similarities than differences with individuals with special needs. They can also prevent gains in an individual’s personal growth and development. Nobody who works in the supportive care field and most compassionate humans do not want to see anyone go without the things they genuinely need. With good advocacy and the proper supports it doesn’t have to happen.

The next several articles in future newsletters will deal with each of the areas of the HRST and discuss how they can be used to identify both areas of need and non-need. “Normal” is such a loaded word, but every person in the world is afflicted with it invarying amounts and in one form or another. HRS Inc’s stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point. The unspoken opposite side of that is that we don’t hassle people when they don’t need it. Unnecessary interventions can be an expensive nuisance. They often prevent the public at large from seeing that they share more similarities than differences with individuals with special needs. They can also prevent gains in an individual’s personal growth and development. Nobody who works in the supportive care field and most compassionate humans do not want to see anyone go without the things they genuinely need. With good advocacy and the proper supports it doesn’t have to happen.

Recognizing the Enemy is Half the Battle!

In last month’s newsletter we addressed The Fatal Five; the top five killers of people in both in both institutional and community settings. Over the next several months we would like to discuss each of them individually. This month we will be discussing GERD and how to recognize it in its many forms. When left untreated, not only is reflux extremely uncomfortable but it can lead to death from frank aspiration, GI bleed or esophageal cancer.

Gastroesophageal reflux disease or GERD is the reverse flow of stomach contents into the esophagus. Once outside the protected environment of the stomach, stomach acid can irritate and harm the esophagus, be inhaled or aspirated into the lungs, or damage the gums and teeth.

GERD is often nature’s way of telling us that our diet needs some attention. Foods that contain acid (tomatoes, citrus) excessive fats, coffee, alcohol, spicy foods, chocolate and mint may cause or worsen reflux. Carrying excessive weight, particularly around the abdomen, can exacerbate the symptoms of reflux, both due to lack of tone of the abdominal muscles and the mechanical pressure of the excess mass exerting upward pressure on the stomach and its contents.

Train those who work and live with vulnerable individuals to recognize and report the signs and symptoms of gastrointestinal disorders at the earliest possible time.

Individuals who have chronic health issues have an increased vulnerability to GERD. Other factors that can contribute to the development of reflux include significant physical disability (especially those that alter the anatomy of the GI tract), hiatal hernia, emotional and behavioral issues, tube feeding diets and, above all, medications (anticholinergics, muscle-relaxers, NSAIDS and MANY others.) Fortunately there are several easily recognizable factors that can indicate that a person has or is likely to develop reflux.

Common signs of reflux are burning pain in the upper abdominal or chest areas, regurgitation of stomach contents, meal refusal, belching and/or flatulence. Less commonly seen are behavioral signs such as hand-mouthing and PICA which, when present, have a 30% correlation with silent reflux. Other symptoms of silent reflux are unexplained weight loss, low serum albumin and progressive anemia.

Medications have been the most commonly used first line of defense against GERD. Proton pump inhibitors such as Prilosec (omeprazole) and Histamine-2 antagonists like Zantac (ranitidine) are frequently used. Problems with these medications include malabsorption of vitamin B-12 and protein. Fractures associated with impaired calcium absorption are also requently seen with long-term use.

Other steps that can be taken to combat reflux include:

• Maintain a proper body weight for height.
• Consume a well-balanced diet in reasonable portions three or more hours prior to bedtime.
• Avoid foods that are known to aggravate heartburn, keeping in mind that everyone benefits from the occasional indiscretion, especially those that are covered in chocolate.
• Identify medications that are associated with GI distress and discuss symptoms with the prescribing physician so that these are used only when absolutely necessary.
• Identify and use positions that promote emptying of the stomach.
• Promote the swallowing of saliva, which neutralizes acidic stomach contents by having individuals who drool evaluated and treated by a speech pathologist.
• Train those who work and live with vulnerable individuals to recognize and report the signs and symptoms of gastrointestinal disorders at the earliest possible time.

Gastrointestinal Rating Information for HRST Users

“Has this person shown signs or symptoms of GI problems, including behavioral signs, within the past year OR had a gastrointestinal bleed at ANY time in their life?”

This is the opening rating question for Item K. Gastrointestinal on the HRST. Any and all conditions affecting the GI tract are rated in this section, but please be aware that we do not wait for the physician to grant a diagnosis in order to score this item. Gastrointestinal issues are some of the most pervasive and under-diagnosed health problems in the world. They may only become evident when the person has experienced some kind of a crisis such as a gastrointestinal bleed or an aspiration event.

Important things to look for in the individuals you serve are food aversions or avoidance, excessive belching, heartburn, rumination, unexplained vomiting, appearance of ingested food, including feeding tube formula, in the back of the throat, coughing within three hours of meals or at night, hand-mouthing or PICA behaviors and unexplained or escalating behavioral issues. Above all, INQUIRE ABOUT THE USE OF OVER-THE-COUNTER MEDICATIONS FOR HEARTBURN, NAUSEA OR OTHER GI ISSUES!

If any of the above conditions or any other signs of possible GI issues have been observed in the past twelve months, answer YES to the first rating question on Rating Item K.

Gastrointestinal issues, once detected, are often easily treated. In almost all cases the earlier an issue is caught the fewer long term consequences will result, resulting in a happier person with a much better outlook in terms of their overall health and quality of life.

Welcome to 2017 and to all new HRST newsletter subscribers! It seems just like yesterday that we were all worried that Y2K was going to crash all computer systems and the world would come to a screeching halt! Now 17 years later, computers are smaller, faster and have more capabilities and our world is still intact. Some things haven’t changed in 17 years, though. The tradition of making New Year’s Resolutions seems to persist although it has been proven time and time again that few people keep those well-meaning pledges. In this article, though, I would like to give you 3 New Year’s Resolutions that you can keep.

Whenever we have the opportunity to improve the quality of life or health for an individual, we should advocate.

1. Always advocate for the individuals that you serve.Whenever we have the opportunity to improve the quality of life or health for an individual, we should advocate. Advocating for someone is just speaking the words that they would say on their own behalf if they had the capabilities. Maybe you know someone who is very physically disabled but is fascinated with bowling. Can you find a way to take that person to bowl? Maybe they just sit on the lane while you throw the ball for them. Maybe just sitting in a bowling alley among all the noise and activity is enough. The important thing is to MAKE IT HAPPEN!
2. Document and report any and all changes in the individuals you serveIt doesn’t matter if you are the person closest to the individual or the person farthest away from the individual, if you see something, say something! That has become somewhat of a trite phrase, but if you notice something different, no matter how small, PLEASE report that change. You may be saving someone’s life. I served an individual who was a huge coffee drinker and loved his snacks. His direct support professional called me one Sunday evening and said he did not want any coffee or his snack and wanted to go to bed. We took him to ER and he was diagnosed with pneumonia. No fever, no cough, no other symptoms at all- he just didn’t want his coffee and snacks. Had the staff not noticed this small change and felt it warranted notification of someone, he might not have received treatment at the early stage of his disease.
3. Make sure to let your work partners know they are valued.All of us are partners in providing services to individuals and, really, none of us are more important than the other. None of us can do this difficult job alone. I once worked for a company where everyone employed by the company was called a “partner”, not an “employee.” We need the direct support professionals to provide direct care and improve individuals’ skills by implementation of programs. We need the QDDP to write the programs and keep the agency in compliance with regulatory standards. We need the nurse to educate on health and wellness and identify actual or potential health issues with individuals. We need the executive director to run the business so everyone is paid for the services they provide and to provide for adequate housing, meals and other needs for individuals served. Notice the small things that someone does. Appreciation doesn’t have to include a big bonus or a raise; a simple “Thank You” goes a very long way.So, after that expensive gym membership goes unused, the size 6 dress still doesn’t fit and the elliptical machine becomes a clothes hanger, please keep in mind these three resolutions above.

They will truly make a difference and require no cash outlay or additional time that no one has enough of already. Little things make all the difference in the world!