What is an ISP?

An Individual Support Plan (ISP) is an ongoing process of establishing goals for individuals and identifies supports and strategies that reflect the person’s strength and abilities and details all of the services and supports needed in order to keep the person in their community. The ISP should reflect an opportunity for the person to live in the least restrictive home setting and to have the opportunity to engage in activities and styles of living which encourage and maintain the integration of the individual in the community through individualized social and physical environments.

Who should be included in the development of the ISP?
  • The person receiving services
  • family members, caregiver, or designated representative
The ISP Planning Process

The ISP should be developed with participation from the following people:

  • The individual
  • Members of the individual’s family
  • A guardian, if any
  • The individual’s Service Coordinator
When is an ISP meeting held?

The meeting is held when it is desired or needed. Some State require meetings every 6 months while others every 2 years, so check with your state regulations.

What is discussed at ISP meetings?

The meeting should focus on 5 areas:

  • Review and gathering information including any new changes or discoveries. Has the person’s health status changed?
  • The person’s goals and desires
  • Review or identify personal value outcomes
  • Recent events that may affect the person’s health, safety and goals
  • Review and develop next-step strategies and resources
What must the ISP include?

The ISP should include:

  • Specific goals
  • The supports the individual needs to reach those goals without regard to the availability of those goals.
  • Who is responsible for providing those supports
  • How often and how much support is needed
  • The criteria foe evaluating the effectiveness of the supports
  • Team members responsibilities for monitoring the ISP implementation
  • The date of the next ISP review.
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Adults with Special Needs and Housing Options

For many years, most people with developmental disability had only the option of living at home with family or become institutionalized. Today, people are given many more housing options. Although there is still a challenge in finding the right fit, home opportunities are more available. The following are housing options for adults with special needs.

Living with parents or family

Adults with special needs may choose to live at home with their families as long as they can. In some cases, adults with developmental disabilities continue to live at home after their parent’s death by hiring a Personal care Attendant (PCA). A PCA is hired by a person with a disability to assist with his or her personal care routine. People are eligible for this service is they qualify for Medicaid if they have a severe, chronic disability and requires physical assistance for personal care.

Section 811

The Section 811 program allows persons with disabilities to live as independently as possible in the community by subsidizing rental housing opportunities which provide access to appropriate supportive services. Serves extremely low-income individuals with serious and long-term disabilities, including physical or developmental disabilities as well as mental illness.

  • Is designed to accommodate the special needs of such persons;
  • Makes available supportive services that address the individual health, mental health and other needs of such persons; and
  • Promotes and facilitates community integration for people with significant and long-term disabilities.”

Group Homes

Residential home which provides 24-hour support services in a group setting. Oversight, training and supervision are provided by staff employed by a provider agency. This type of facility is provided to those with significant health and/or safety needs.

Individual Supports

Are limited to 3 or fewer individuals and provide need-based support and services for those living in their own homes or apartments, but do not require 24-hour staff support and supervision.

Assisted living communities,

  • also referred to as supported care facilities, provide care to older adults who are unable to live independently, often needing assistance with ADLs. Most offer private and semi-private apartment-style living often containing a living area and kitchenette.

 

Guardianship

When an individual with a developmental disability becomes an adult, Guardianship is something you should consider. In many States, the law will see the individual as an adult able to make decisions on their own. If you have a child with a disability who many never have the ability to make legal decisions on their own, the following information are links on guardianship and what you need to know about them.

Does my child need a guardianship?– Special Needs Alliance

Guardianship– Cincinnati Children’s

Guardianship: A basic understanding for parents– Parenting Special Needs

Guardianship and adult children with developmental disabilities-ICHE

Legal guardianship and your adult child with disabilities– A day in our shoes

My child with a disability is an adult- Now what? – Parenting NH

Special needs children turning 18 years old– Today’s Caregiver

Understanding guardianship for adults with special needs– Protected Tomorrows

When your child turns 18: A guide to special needs guardianship– Friendship Circle

Guardianship- State Specific Requirements

Each State has it own requirements for Guardianship, click on your State below to find more information:

Alabama

Alaska

Arkansas

Arizona

California

Colorado

Connecticut

Delaware

District of Columbia

Florida

Georgia

Hawaii

Idaho

Illinois

Indiana

Iowa

Kansas

Louisiana

Maine

Maryland

Massachusetts

Michigan

Minnesota

Mississippi

Montana

Nebraska

Nevada

New Hampshire

New Jersey

New Mexico

New York

North Carolina

North Dakota

Ohio

Oklahoma

Oregon

Pennsylvania 

Rhode Island

South Carolina

South Dakota

Tennessee 

Texas

Utah

Vermont

Virginia

Washington

West Virginia

Wisconsin

Wyoming

What is a Generalized Seizure?

A generalized seizure, formally known as a gran mal seizure affects both sides of the brain, and starts in all parts of the brain at the same time. About 25 percent of people with epilepsy have generalized seizures. It affects all ages, socioeconomic and racial groups.

There are 4 phases of a generalized seizure:

  1. Prodromal. This is the first phase where an early sign may include a group of symptoms hours or days before the seizure including depression, difficulty concentrating, headaches, insomnia and mood changes.
  2. Aura. Typically, an aura occurs from a few seconds to a few minutes before the arrival of the seizure. Signs may include blurry vision, buzzing, ringing or an abdominal sensation.
  3. Tonic-Clonic. This is the phase where the whole body is affected. The body begins to stiffen and the person loses consciousness and falls. This is followed by a violent uncontrollable shaking. During this phase, the person may have difficulty breathing, an inability to swallow, may drool and begin to sweat.
  4. Postictal. Occurs at the end of the seizure, common signs include confusion, anxiety, depression, embarrassment, fear, memory loss, upset stomach and sleepiness.
There are 6 types of generalized seizures:
  1. Absence (Petit Mal). It occurs throughout the entire brain beginning and ending very quickly. The person becomes unconscious with a blank stare. It may appear the person is day dreaming.
  2. Tonic-Clonic. When the body stiffens and shakes. usually last 1 to 3 minutes.
  3. Clonic. When a person has a muscle spasm in the face, neck and arms may last several minutes.
  4. Tonic. The muscles in the arms, legs and trunk are affected. Usually last less than 20 seconds.
  5. Atonic. the muscles go limp and can cause a person to fall or head his or her head if they are standing.
  6. Myoclonic. Muscles suddenly jerk. The electrical impulses are strong enough to throw a person to the ground.
What Causes Epilepsy with Generalized Seizures?
Possible causes of epilepsy and seizures include:
  • genetics
  • a change in the structure of your brain
  • autism
  • an infections of the brain, such as meningitis or encephalitis
  • head trauma
  • a brain tumor
  • Alzheimer’s disease
  • a stroke, or a loss of blood flow to the brain resulting in brain cell death
  • congenital conditions, including Down syndrome or tuberous sclerosis

First Aid For Tonic Clonic Seizures:

Call 911 if:
  • The person has never had a seizure before.
  • the person has difficulty breathing or waking after the seizure.
  • The seizure lasts longer than 5 minutes.
  • The person has a seizure back-to back.
  • The person is injured during the seizure.
  • The person has an additional condition like diabetes, or heart disease.
Steps
  • Ease the person to the floor.
  • Turn the person gently onto the side (this will help the person breathe).
  • Clear the area around the person of anything hard or sharp
  • Put something soft and flat, like a folded jacket, under his or her head.
  • Loosen ties or anything around the neck including button on a shirt.
  • Time the seizure.
Familiarize Yourself With The Warning Signs 

Each person is different. Typically warning signs of a seizure may include:

  • Loss of consciousness
  • Stiffening of the body
  • Jerking of limbs
  • Slight twitching
  • A loss of awareness
Do Not:
  • Do not hold the person down or try to stop his or her movements.
  • Do not put anything in the person’s mouth. This can injure teeth or the jaw. A person having a seizure cannot swallow his or her tongue.
  • Do not try to give mouth-to-mouth breaths (CPR). People usually start breathing again on their own after a seizure.
  • Do not offer the person water or food until he or she is fully alert.

After the seizure:

After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Try to help the person find a place to rest. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely.

Don’t try to stop the person from wandering unless he or she is in danger.

Don’t shake the person or shout.

Stay with the person until he or she is completely alert.

 

Resources

Epilepsy Ontario

Epilepsy Talk

Healthline

University of Chicago Medicine

WebMD

2019 Disability Awareness Month and Observance Calendar

Annual awareness observances are sponsored by federal, health and non-profit organizations. Awareness campaigns serve the purpose of informing and educating people on a certain causes. Each year, the number of special needs organizations bringing awareness to specific disabilities and disorders seem to grow. Awareness activities range from one day to a month.
Here is a calendar of major special needs awareness months, weeks, and days. Most websites include awareness toolkits, promotional materials and fact sheets. Since it is still early in the year, some of the campaigns still have 2018 campaigns on their websites. I will add new information once the changes are up on the websites.

January

National Birth  Defects Month

January 4- World Braille Day

January 20- International Day of Acceptance

January 24- Moebius Syndrome Awareness Day

February

February 15- International Angelman Day

February 28- Rare Disease Day

March

Cerebral Palsy Awareness Month

Developmental Disabilities Awareness Month

Kidney Awareness Month

Multiple Sclerosis Month

Social Work Awareness Month

Trisomy Awareness Month

March 1- Self-Injury Day

March 1- International Wheelchair Day

March 21- World Down Syndrome Day

March 26- Purple Day for Epilepsy

April

April 2- World Autism Awareness Day 

May

Better Hearing and Speech Month

Ehlers-Danlos Awareness Month

Mental Health Awareness Month

National Asthma and Allergy Awareness Month

Prader Willi Awareness Month

Williams Syndrome Awareness Month

May 1- Global Developmental Delay Day

May 15- Tuberous Sclerosis Global Awareness Day

May 5-12- Cri du Chat Awareness Week

May 8-14- Brain Injury Awareness Week

June

June 17- CDKL5 Awareness Day 

June 23- Dravet Syndrome Awareness Day (Canada)

Tourette Syndrome Awareness Month

July

July 15- Disability Pride Parade (NY)

July 15- Disability Awareness Day (UK)

July 22- National Fragile X Awareness Day

September

Chiari Awareness Month

Craniofacial Acceptance Month

Duchenne Muscular Dystrophy Awareness

Fetal Alcohol Spectrum Syndrome Awareness Month

Hydrocephalus Awareness Month

National Spinal Cord Awareness Month

Sickle Cell Awareness Month

September 7- World Duchenne Awareness Day

September 9- Fetal Alcohol Awareness Day

October

ADHD Awareness Month

Down Syndrome Awareness Month

Dysautonomia Awareness

National Disability Employment Awareness Month

National Dyslexia Awareness Month

Occupational Therapy Awareness Month

October 6- World Cerebral Palsy Day

October 14-20 Invisible Disabilities Week

OCD Awareness Week

National Physical Therapy Month

Rett Syndrome Awareness Month

Special Needs Law Month

Spinal Bifida Awareness Month

November

22q Awareness Month

Epilepsy Awareness Month

November 1- LGS Awareness Day

November 7- National Stress Awareness Day

November 15- World Ohtahara Syndrome Awareness Day

December

December 3- International Day of Persons with Disabilities

Holiday Fine Motor Activities

Fine motor skill activities should include skill development in using the small muscles in the hand. Most activities focus on using pencils, scissors and tongs. This holiday season, why not engage your special needs child in a fun, engaging activity that will help to improve the pincer grasp and hand manipulation? The following links include fine motor activities with many items you can find around your home.

5 fine motor holiday activities

Candy cane Christmas fine motor skills activities for kids

Candy cane pipe cleaner garland

Christmas cards cane fine motor activity

Christmas crafts for kids

Color sorting activity for Christmas

Easy ornaments for kids 

Grow your own Christmas tree

Jingle bell painting

Playing with pine needles

Pom pom painting Christmas tree craft

Popsicle stick snow ornaments

Present wrapping fine motor skills activity

Recycled cards Christmas fine motor skills

Recycled ornament garland craft

Styrofoam tree decorating Christmas craft activity

Tissue paper wreath ornaments

Yarn and bead Christmas tree craft

Resources For Teaching Sequencing Skills

Sequence is defined as a set of related events, movements, or things that follow each other in a particular order. For many children and adults with developmental delays and disabilities, the ability to arrange thoughts, information and language may be a challenge due to issues with their executive function capabilities. The following resources, tips and strategies will help you teach sequencing skills.

How to teach sequencing skills at home

How to teach sequencing skills to children

How to teach sequencing to preschool children

Sequencing activities for students with autism

Sequencing skills teaching strategies 

Story sequence strategies

Strategies for teaching your child sequencing skills

Teaching sequencing skills

The importance of sequencing skills in a child’s development

Tips to teach sequencing skills in children

10 Easy Steps of Audit and Survey Readiness

Annual audits and surveys can be very intimidating. A group of state surveyors showing up at the residence or day program to review services given to individuals with developmental disabilities.

What is the purpose of the audit?

In each state, Immediate Care Facilities (ICF), Immediate Residential Alternatives (IRAs), Waiver services or privately operated programs are funded through Medicaid Assistance Annually State agencies. Annual surveys serve the purpose of recertifying facilities and to make any further recommendations. Overall, the goal is to ensure the quality of for the individuals receiving services.

What are surveyors looking for?

In recent years, the focus is more on ensuring facilities that provide services and supports to individuals with intellectual and developmental disabilities are providing opportunities for individual choices including person-centered planning, community inclusion and choice-making. Typically, State auditors will review the Individualized service Plan (ISP) document to determine it the ISP is both current and accurate.

Audit Preparation

State Auditors generally spend some time talking to staff. They may ask you questions relating to the person’s plan. The questions are often generated after they have read the individual’s ISP plan. The questions that are asked are more than likely things that you do well everyday. here are 10 easy steps as you prepare for the auditing process:

  1. Knowledge of Individuals. know each person’s plan including person-centered planning plan, medical needs, preferences and habilitation plan.
  2. Cleanliness. Make sure the environment is neat and orderly.
  3. Privacy. Remember to give the person privacy when needed.
  4. Choice. Offer choices throughout activities whenever possible. The auditors may ask you how do you teach choice-making.
  5. Tone. Always speak in a positive and appropriate tone of voice.
  6. Small groups. Work in small groups whenever possible. Incorporate variety  of choice during activities.
  7. Community activities. Ensure individuals are able to make choices in activities in the community and community inclusion opportunities are available.
  8. Universal Precaution Guidelines. Know the precautions and follow them. Remember to change gloves when moving from one individual to the next.
  9. Active Programming. The auditors may ask questions related to what they have read in the individuals ISP or CFA (Comprehensive Functional Assessment).
  10. Safeguards. make sure you are able to describe the individual’s supervision needs.

Remember: Demonstrate your self-confidence, because you are good at what you do!

What is Lowe Syndrome?

Lowe Syndrome also known as Oculocerebrorenal Syndrome is a rare genetic disorder that affects the eyes, brain and kidneys. It has a prevalence of 1 in 500,000 and mainly affects males.

Signs and Symptoms
  • Congenital cataracts
  • eye abnormalities and eye disease
  • glaucoma
  • kidney abnormalities (Renal Fanconi Syndrome)
  • dehydration
  • abnormal acidic blood
  • progressive kidney problems
  • feeding problems
  • bone abnormalities
  • scoliosis
  • weak or low muscle tone (hypotonia)
  • joint problems
  • developmental delays including motor skills
  • short stature
  • intellectual disability
  • seizure
  • behavioral issues

Children and adults diagnosed with children and adults may also show the following signs and symptoms due to an intellectual disability:

  • decrease learning ability
  • delays in crawling
  • delays in sitting up
  • difficulty solving problems
  • lack of curiosity
  • language and speech delays
  • poor memory
  • behavior problems
Teaching Strategies

The following strategies will help when teaching a child or an adult diagnosed with Lowe Syndrome:

  • Use short and simple sentences to ensure understanding
  • Repeat directions
  • Teach specific skills when possible
  • Use strategies such as chunking, backwards shaping, forward shaping and role modeling.
  • Use concrete information
  • Provide immediate feedback

Image thanks to Robert Thomson on Flickr.com (creative commons)

Resources

National Organization for Rare Disorders

Genetics Home Reference

Dove Med

Wikipedia

Teaching Strategies For Students With A Nonverbal Learning Disorder

Nonverbal Learning Disorder is a disorder you may or nay not heard of. It shares similar characteristics to autism such as the challenge in reading body language but is also quite different. By learning the signs and symptoms of nonverbal learning disorder, the better chance you have in using effective teaching strategies.

Nonverbal learning disorder is defines as a person who has difficulty in interpreting and understanding non verbal cues in the environment If 93% of how we communicate is nonverbal, a person with nonverbal learning disorder is only getting 7% of daily communication.

Dr. Byron P. Rouke of the University of Windsor developed the following criteria to assess nonverbal learning disorder:

  1. Perceptual deficits usually on the left side of the body. The child has difficulty understanding or perceiving information through the skin of both hands but the left hand has more difficulty than the right.
  2. Tends to be clumsy
  3. Difficulty with visual-spatial organizational skills. Finds it difficult to organize notes.
  4. Difficulty when encountering new information.
  5. Difficulty in knowing what is expected of you and hard to see the bigger picture
  6. Distort sense of time. Time is abstract and non-linear
  7. Well-developed, rote and verbal capacity
  8. Repetitive way of speaking
Signs and Symptoms
  • Excellent vocabulary and verbal expression
  • Excellent memory skills
  • unable to see the bigger picture
  • Poor motor and coordination skills
  • Difficulty with reading
  • Difficulty with math reading problems
  • Fear of new situations
  • May have symptoms of anxiety, depression
  • Misreads body language
  • Well-developed vocabulary
  • Better auditory processing skills than visual processing skills
  • Focus on details

Teaching Strategies For Parents and Teachers
  • Give assignments in chunks
  • Give constructive feedback
  • Create a daily class routine and stick to them
  • Write the class schedule on the board
  • Provide several verbal cues before transition
  • Give the student time to preview and prepare for new activities such as group projects
  • Minimize transitions
  • Offer added verbal explanations when the student or child seems confused
  • Teach in sequential steps
References

Rondalyn Varney Whitney/OTR, Nonverbal learning disorder: Understanding and coping with NLD and Aspergers: What parents and teachers need to know (2008)

Woliver, Robbie (2008) Alphabet Kids: From ADD to Zellwer Syndrome.

Learning Disabilities of America

Understood