Category Archives: Residential Services

What is Prader Willi Syndrome?

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May is Prader Willi Syndrome Awareness Month

What Exactly is Prader Willi Syndrome?

Prader Will Syndrome is a genetic disorder resulting from an abnormality of chromosome 15 such as a loss of active genes. In most cases (70%) the paternal copy is missing and in some cases (25%), will exhibit two maternal copies of Chromosome 15. The genetic disorder was initially described by John Langdon Down and was named after Drs. Andrea Prader, Heimrich Willi and Alexis Labhart in 1956 and is found in 1 in 20,000 births affecting both sexes. It is also the most common recognized genetic form of obesity.

During childhood, individuals diagnosed with Prader-Willi Syndrome tend to eat constantly leading to obesity and for some, type 2 diabetes will develop. This complex disorder affects appetite,growth, metabolism, cognitive functioning and behavior.

Signs and Symptoms

People with Prader-Willi Syndrome (PWS) tend to never feel full (hyperphagia) which leads to constant eating. Signs in infants include, problems with strength, coordination and balance. Often there are feeding problems at birth, delayed speech and gross motor development. Children may be born with almond-shaped eyes and undeveloped sexual organs. Cognitive disabilities and developmental delays may also be present.

As children began to grow, constant craving for food often leads to behavior challenges including hoarding food, eating frozen food and food left in the garbage causing controlling or manipulative behavior.

Medical Issues

Medical concerns may include the following:

  • Sleep Apnea
  • Respiratory/Breathing
  • High pain tolerance
  • Severe stomach illness
  • Difficulty with vomiting reflex
  • Excessive appetite
  • Binge eating
  • Eye problems
  • Choking
  • Hypothermia
  • Leg Swelling
  • Consuming unsafe items
  • Negative reactions to medications
Teaching Strategies

Most people diagnosed with Prader Willi Syndrome fall between the moderate and mild levels of an intellectual disability meaning there may be challenges in the area of reasoning, problem-solving, planning, judgment, abstract thinking and learning.  A child or student functioning at the moderate level may lag behind their peers in the area of language and pre-academic skills. Adults may function at an elementary school level and will require support in both work and daily living skills. For children and students functioning at the mild level, there may be difficulties in the area of reading, writing, math and money management. as children grow into adults, there may be a need for support in abstract thinking, executive functioning (planning, prioritizing and flexibility) as well as short-term memory and money management.  Teaching strategies should focus on the following:

  • Aggression management
  • Anger management skills
  • Anxiety management
  • Emotional regulation
  • Personal safety
  • Social skills

Keep in mind that many children and adults diagnosed with Prader-Willi Syndrome may have additional challenges in learning due to medication. Some people take medication such as a growth hormone therapy which can cause fatigue.  The following teaching strategies may also be useful when teaching a student diagnosed with Prader Willi Syndrome:

  • Use a multi-sensory approach. This involves a teaching style that includes auditory, visual, tactile, spatial, and kinesthetic (hands on activities)
  • Break learning into small steps. Check for understanding by asking the student to repeat back to you.
  • Teach a skill at least 2-3 times a day. This will help the student retain information.
  • Managing perseveration. Set up a rule where the student can a question no more than 3 times. After the third answer. Ask the student to repeat the response back to you.
Adult Day Program/Residential Setting

Most people with Prader Willi Syndrome due to their cognitive level, will be provided services in either a day habilitation program or live in a community providing residential services. Once a person becomes an adult, it becomes a little bit more tricky on maintaining issues especially behavioral. For instance, while living at home, a parent has the right to lock the refrigerator which is often suggested by experts. However, this becomes a violations of a person’s rights once they reach adulthood. Typically, committees meet to help make the right decisions along with family members and the adult diagnosed with Prader Willi Syndrome. Here are some suggestions.

  • Allow the person to have control of what is important to them. Have discussions on nutrition and staying healthy. Check to see if this may be an appropriate topic the person may want to improve by adding to their person-centered plan. Hold discussion groups in both day programs as well as in residential to discuss various topics on health and nutrition including holding classes on mindfulness and meditation.
  • Trips to shopping malls can be very tricky. Try to avoid mall’s eatery and plan if it is a group trip to have people bring their own lunches.
  • When teaching, allow time before giving additional prompts
  • Give praise as much as you can when it is appropriate.
  • Use visuals as much as you can including graphics and pictures.
Staff Training

Staff training on Prader-Willi Syndrome should include the following topics:

  • Overview of Prader-Willi Syndrome including, causes, symptoms, characteristics, nutrition, and self-regulation.
  • Impact on the family including the stresses families experience.
  • Teaching techniques including problem-solving, forward shaping and role-modeling.
  • Individual rights
  • Managing behavior and crisis intervention
  • Community inclusion trips and activities
Resources

Foundation for Prader-Willi Research

Prader-Willi Syndrome Association (USA)

Prader-Willi Syndrome (Mayo Clinic)

Reference

Prader-Willi Syndrome Association

 

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Speech-language Pathology and Adult Services

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Guest Blogger, Anne Marie Pineiro, M.A. CCC-SLP, 

Speech-language Pathologists serve individuals, families, and groups from diverse

linguistic and cultural backgrounds. Services are provided based on applying the

best available research evidence, using expert clinical judgments, and considering

clients’ individual preferences and values. Speech-language pathologists address

typical and atypical communication and swallowing in the following areas:

–pragmatics (language use, social aspects of communication)

-literacy (reading, writing, spelling)

– prelinguistic communication (e.g., joint attention, intentionality, communicative signaling)

–paralinguistic communication

  • cognition- attention,  memory,  sequencing,  problem solving,  executive functioning
  • feeding and swallowing- 4 phases of swallowing

-oral, pharyngeal, laryngeal, esophageal

–orofacial myology (including tongue thrust)

-oral-motor functions

Source:   http://www.asha.org/uploadedFiles/SP2007-00283.pdf

In providing services to those Adults diagnosed with a variety of Developmental Disabilities, the SLP’s role may become much more defined, focusing on what is most functional to an individual in the areas of speech, receptive and expressive language (verbal or non-verbal communication) and feeding/ swallowing.  Very often we are attempting to assess and/or maintain an individual’s current level of functioning in the above areas and to train all those involved in the care of that individual in the strategies and implementation of them to achieve that goal.  In our Agency, for example, we break the assessment down into the following areas in order to develop functional and measurable outcomes:

Speech

  1. Does the individual use speech functionally to communicate wants/needs in a variety of settings?
  2. If so, is their speech understood by all, some, few communicative partners?  Are there any strategies a person might use to increase his/her intelligibility- modifying volume, rate, resonance, increasing fluency, etc.?  Does the person use Augmentative Communication to supplement speech when he/she cannot be understood e.g. low/high tech communication device, writing, American Sign Language, Picture Language Board, etc.

Language

  1. Receptive language (Language comprehension) including attention to objects, using objects functionally, identification of objects and/or pictures, comprehending one, two or three-step oral directives, vocabulary, comprehension of attributes and spatial relationships, or auditory comprehension on the word, sentence and paragraph levels.  Is comprehension on the literal or inferential levels?
  2. Expressive language- (Language expression)- for those who are verbal, the MLU (mean length of utterance) is assessed.  For non-verbal individuals, language expression can be in the form of pointing to one or two picture symbols consecutively on a picture language communication board or AAC device, writing or typing single words, phrases, sentences or paragraphs on paper, computer or AAC device.

-AAC device assessments for nonverbal individuals take into account the individual’s cognitive skills, physical abilities in order to access the device (direct selection with hand or finger, eye gaze, head pointer, switch/scanning, etc.), receptive and expressive language skills, communicative intent and pragmatic language abilities, and literacy.  All those involved in the individual’s care play an extremely important role in whether or not someone may receive an AAC device since they will be the ones to set up/take down the device and provide basic maintenance for the device, including programming, charging, etc.

Feeding and Swallowing:

Many people wonder why an SLP would be the one to review an individual’s mealtime plan or protocol.  ASHA guidelines state it best: “The speech-language pathologist is a primary professional involved in assessment and management of individuals with swallowing and feeding disorders. These areas include:

  • Performing clinical swallowing and feeding evaluation;
  • Performing instrumental assessment of swallowing function with medical professionals as appropriate;
  • Identifying normal and abnormal swallowing anatomy and physiology;
  • Identifying signs of possible or potential disorders in upper aerodigestive tract swallowing and making referrals to appropriate medical personnel;
  • Making decisions about management of swallowing and feeding disorders;
  • Developing treatment plans;
  • Providing treatment for swallowing and feeding disorders, documenting progress, and determining appropriate dismissal criteria;
  • Providing teaching and counseling to individuals and their families;
  • Educating other professionals on the needs of individuals with swallowing and feeding disorders and the speech-language pathologists’ role in the diagnosis and management of swallowing and feeding disorders;
  • Serving as an integral part of a team as appropriate;
  • Advocating for services for individuals with swallowing and feeding disorders;
  • Advancing the knowledge base through research activities.

In addition, Speech-language pathologists have extensive knowledge of anatomy, physiology, and functional aspects of the upper aerodigestive tract for swallowing and speech across the age spectrum including infants, children, and adults (including geriatrics). The upper aerodigestive tract includes oral, pharyngeal, and cervical esophageal anatomic regions. Speech-language pathologists also have extensive knowledge of the underlying medical and behavioral etiologies of swallowing and feeding disorders. In addition, they have expertise in all aspects of communication disorders that include cognition, language, and behavioral interactions, many of which may affect the diagnosis and management of swallowing and feeding disorders.”

Source: http://www.asha.org/policy/TR2001-00150/#sec1.3

The dysphagia and feeding disorders that are seen in adults with developmental disability include poorly developed and absent feeding and oral preparation skills and competencies, physiological and anatomical impairments that degrade oral-pharyngeal and esophageal bolus motility, and disruptive or maladaptive mealtime behaviors. Nutrition, hydration, saliva management, ingestion of medications, and management of the oral hygiene bolus may be involved. Upper airway obstruction (choking), aspiration, malnutrition, and dehydration may result from the disorder (Rogers et al., 1994, Sheppard et al., 1988).  Source: http://www.asha.org/policy/TR2001-00150/#sec1.3

Therefore, in our Agency that serves Adults with Developmental Disabilities, the SLP works as one member of the Team, including the Occupational Therapist, Physical Therapist, Nurse, Residential Team and Family Members to create a mealtime protocol or plan which simply states the best way to maximize nutrition while at the same time attempting to decrease incidents of choking (partial or complete blockage of the airway) or aspiration (food or liquid making its way into the lungs which can lead to aspiration pneumonia).  These plans are developed so that all involved in the individual’s care may be informed of the best feeding practices for that individual which include: adaptive mealtime equipment (any cup spoon, plate, straw, etc. used for an individual to improve ability to eat independently and to improve oral-motor control), positioning in chair or wheelchair, degrees of assistance needed for self-feeding, food and liquid consistencies, food allergies and intolerances, the presence of any mealtime behaviors, including rapid pace of eating which may increase risk of choking or aspiration, and any specific instructions the caregiver would find useful in feeding the individual or maximizing the individual’s ability to feed themselves.

I hope you find this information helpful in identifying the SLP’s role in providing services to adults with Developmental Disabilities.

This information is in no way intended to serve as a complete guide in this area, but is meant to simply assist in identifying ways the SLP works as part of the Interdisciplinary Team in serving adults with developmental disabilities in a day habilitation setting

Lesson Plan: Sensory Activities for Children and Adults

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Image result for orange

Orange is a color that is associated with the fall months of October and November. It can also be used as a training activity for people with developmental disabilities.

Facts about the color orange:

  • Orange is the color between red and yellow
  • It is associated with amusement, extroverts, warmth, fire ,energy, danger taste, aroma and autumn
  • It is the national color of Netherlands
  • It is the symbolic color of Buddhism and Hinduism.

Activity: What’s in the Box

Learning Objective: to identify various items using a multi-sensory approach

Activity Area:

  • Visual
  • Tactile
  • Olfactory
  • Kinesthetic

Materials needed:

  • shoe box
  • candy corn
  • carrot
  • orange
  • circus peanuts
  • crayon
  • cheeze-it
  • balloon
  • pumpkin
  • leaf

Instructions: Place all items into an empty container such as a shoe box. Once completed, have participants sit in a circle and pass around the box. Give each person an opportunity to touch the object and to guess the name of the object. For people with a severe cognitive level or multi-disabilities, provide hand over hand guidance.

Prompting:

Discuss with the group or class the various sizes, the aroma, etc.

Alternative Activity:

  1. You can also do a compare and contrast activity by adding items into the box of different colors and having the group choose the orange items.
  2. Have the group create a collage by cutting out items in a magazine that are orange. This will help with improving fine motor skills.

 

 

Art Projects for Disabled Adults

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Art therapy allows those who are disabled to have a voice.
Source: EHow

Art therapy can give disabled adults a sense of personal accomplishment, whether they have a mental, physical or emotional disability. Art projects can help to improve a person’s outlook on life, give voice to unexpressed emotions — especially for those with developmental disabilities — or provide a way to make some extra money selling artistic works. When Pablo Picasso said, “Art washes from the soul the dust of everyday life,” he wasn’t just referring to art’s beholders, but those who create it as well. Click here for the rest of the story

Understanding Medicaid Waiver Services

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Medicaid.gov - Keeping America Healthy

Home and Community-Based services Waiver allows people with long-term such as disabilities to receive services in a home or community setting. The goal of the waiver program is to enable States to tailor services to meet the needs of a particular group. Standard services can include case management, home health aide, adult day habilitation and respite care. The Federal and State Governments jointly fund and administers the program. At the Federal level, the Centers for Medicare and Medicaid Services (CMS) administers the program. Each State administer its Medicaid program in accordance with CMS approved State plan. Each State is allowed a great amount of flexibility in designing and operation it its Medicaid program as long as it complies with the Federal requirements.

 

Activity Ideas for Developmental Disabled Adults

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Board games.
Source: E-How

When it comes to activities, disabled adults have distinctive needs. Unlike average adults, disabled people may require the help of respite workers to do certain activities. However, the needs of disabled adults are not always comparable to those of disabled children because many disabled adults are sexually mature and socially competent. Many activities meet the needs of developmentally disabled adults. Click here to read the rest of the story

Developmental Disability Acronyms You Should Know

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Similar to special education, adult programs are full of acronyms that are used during meetings and in general conversation. Whether you are new to the field or a parent or caregiver with a child entering adult services, you will find this page useful as you navigate your way through adult services and programs.

acronyms

 

Active Treatment (AT). A continuous, aggressive, and consistent implementation of a program of specialized training, treatment and related services that helps people function as independent as possible.

American Disabilities Act (ADA)- A civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life.

Assessment– A way of diagnosing and planning treatment for individuals with disabilities as part of their individual plan of service.

Autism Spectrum Disorder (ASD)- A group of development disorders that can cause significant social, communication and behavioral challenges.

Cerebral Palsy– A disorder that affects muscle tone, movement and motor skills.

Commission on the Accreditation of Rehabilitation Facilities (CARF)- An independent, non-profit accreditor of health and human service organizations.

Council on Developmental Disabilities-State Councils on Developmental Disabilities (Councils) are federally funded, self-governing organizations charged with identifying the most pressing needs of people with developmental disabilities in their state or territory. Councils are committed to advancing public policy and systems change that help these individuals gain more control over their lives.

Day Program– A day program to assist individuals in acquiring, retaining, and improving skills necessary to successfully reside in a community setting. Services may include assistance with acquisition, retention, or improvement in self-help, socialization, and adaptive skills; provision of social, recreational, and therapeutic activities to maintain physical, recreational, personal care, and community integration skills; and development of non-job task-oriented prevocational skills such as compliance, attendance, task completion, problem solving, and safety; and supervision for health and safety.

Developmental Disability– A group of conditions due to an impairment in physical, learning, language or behavior areas.

Developmental Center– residential facility serving individuals with developmental disabilities owned and operated by the State.

Habilitation– Service that help you keep, learn, or improve skills and functioning for daily living.

Human and Community Based Services (HCBS Waive)- Provides opportunities beneficiaries  for Medicaid beneficiaries to receive services  in their own home or community.

Health Insurance Portability and Accountability Act (HIPPA) – Protects individuals records and other personal information.

Intermediate Care Facilities (ICF/ID)- Medicaid benefit that enables states to provide comprehensive and individualized healthcare and rehabilitation services to individuals to promote their independence.

Independent Living Center (ILC)- Community-based resource, advocacy and training center dedicated to improving the quality of life for people with disabilities.

Individualized Service Plan (ISP)- Written details of the supports, activities and resources required for the individual to achieve personal goals.

Individual supported employment-  Competitive employment in the community in integrated business settings for comparable wages.  Paid support staff provides training on the job site as well as follow along services and supports to the individual and business as needed.
Job Coach– An individual employed to help people with disabilities learn, accommodate and perform their work duties including interpersonal skills.

Individualized Supported Living Arrangement (ISLA) – This residential service is provided to people with developmental disabilities and/or intellectual disabilities in their own homes or apartments.  The level of support provided is individualized to the person’s need for training and assistance with personal care, laundry, money management, etc.  Individuals who receive ISLA typically need a higher level of support than people in a Supported Living Arrangement (SLA).

Intellectual Disability–  a disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18.

Least Restrictive Environment (LRE)- Individuals with disabilities should live in the community of their choice and receive the necessary services that will help them maintain their independence.

Level of Care- ICF eligibility determination

Person Centered Planning (PCP)- A set of approaches designed to assist someone to plan their life and supports. Used as an ongoing problem-solving process uses to help people with disabilities plan for their future.

Plan of Care– A document developed after the assessment that identifies the nursing diagnoses to be addressed in the hospital or clinic. The plan of care includes the objectives, nursing interventions and time frame for accomplishments and evaluation.

Provider-Typically private non-profit community organizations that provide vocational (and other types) of services to adults with disabilities.  These services are usually paid by state agencies.

Qualified Intellectual Disability Professional (QIDP) -Ensures individuals with Developmental and Intellectual disabilities receive continuous active treatment in accordance with Individual Support Plans (ISPs). Provide counseling, case management, and structured behavior programming to people with disabilities receiving Residential Services.  Responsible for the implementation of rules and regulations as required by licensing entities. Qualified Developmental Disability Professional (QDDP): Individual qualified to work as an expert with persons with developmental disabilities. The QDDP has a four-year college degree in an area related to developmental disabilities and a minimum of one-year experience working in that field.

Quality Assurance/Improvement (QA/QI)- Facilitate quality improvement activities to ensure compliance with accreditation standards regulations, funding source requirements, agency standards and assurance that all required manuals and procedures are maintained and implemented

Residential Care – Services provided in a facility in which at least five unrelated adults reside, and in which personal care, therapeutic, social, and recreational programming are provided in conjunction with shelter.  This service includes 24-hour on-site response staff to meet scheduled and unpredictable needs and to provide supervision, safety, and security.

Respite Care – Temporary relief to a primary caregiver for a specified period of time.  The  caregiver is relieved of the stress and demands associated with continuous daily care.
Self-Advocacy: an individual with disabilities speaking up and making their own decisions.

Self-Determination- Individuals have control over those aspects of life that are important to them, such as the services they receive, their career choices and goals, where they live, and which community activities they are involved in.

Service Coordination- Assists individuals with developmental disabilities and their families in gaining access to services and supports appropriate to their needs.

Supported Employment- Community based employment for individuals with disabilities in integrated work settings with ongoing training and support typically provided by paid job coaches.
Supported

Transition Services – Services provided to assist students with disabilities as they move from school to adult services and/or employment.

Transition Planning

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IDEA Regulations and Transition Services

The term “transition services” means a coordinated set of activities for a child with a disability that:

  • Is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the child with the disability to facilitate the child’s movement from school to post-school activities, including postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation
  • Is based on the individual child’s needs, taking into account the child’s strengths, preferences, and interest.
  • Includes instruction , related services, community experiences, the development of employment and other post-school adult living objectives, and if appropriate, acquisition of daily living skills and functional vocational evaluations.
What is the Transition Process?

The transition process is designed to help students with disabilities move smoothly from school to adult life.

Resources on Transition Planning

Center for Parent Information and Resources– Webpage includes information on IDEA’s requirement on transition and how to include the student in the transition process.

Disability’s.gov’s Guide to Student Transition Planning– Topical links on secondary education and transition, transitioning to adult health care and options for life after high school.

National Association of Special Education Teachers– Great webpage on a variety of topics relating to transition planning including, overview of transition services, types of services covered, recordkeeping, employment planning, travel training, assistive technology and residential placement options.

National Parent Center on Transition and Employment– Website includes information on middle and high school transitioning planning including, IDEA, IEP, college planning and several worksheets on preparing for employment and transition planning.

Understood– article on understanding the transition process.

WrightsLaw– This page contains loads of information on transitioning planning including articles on IEP and transition planning, legal requirement for transition components of the IEP and IDEA 2004.

Happy Holidays!

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HAPPY HOLIDAYS2015

Special Needs Resource Blog will take a break during the holidays and will return Monday, January 4, 2016 with new information, tools and resources to post including more downloadable free tools and templates Monday thru Thursday. I am excited and look forward to sharing more resources with you in the new year.
Thanks to all of you for following my blog this year. Wishing you and your families joy and peace all through the holidays and throughout the new year. May the spirit of the holidays be with you throughout the new year.  🙂   🙂

 

HAPPY THANKSGIVING!

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