Section 504 is a federal law designed to protect the rights of individuals with disabilities in programs and activities that receive Federal financial assistance from the U.S. Department of Education (Edefines a physical or mental impairment as any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genito-urinary; hemic and lymphatic; skin; and endocrine; or any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities.
Today is National Trisomy Awareness Day. Below are 10 important facts on Trisomy 18.
- It is also known as Edwards Syndrome
- It is a condition caused by an error in cell division
- An extra chromosome in 18 develops
- Occurs in 1 out of every 2500 pregnancies in the United States
- It is 1 in 6000 live births
- Only 50% of babies who are carried to term will be born alive
- Children are often born with heart defects
- Features include a small head, small jaw, clenched fists and severe intellectual disabilities
- It is named after John Hilton Edwards, who first described the syndrome in 1960
- It affects different organ systems
Cerebral palsy is a condition caused by damage to the specific areas of the brain. Cerebral palsy refers to the brain and palsy to muscle weakness. Cerebral palsy is a syndrome of motor impairment with posture and movement disorder. It is a non-progressive disorder, however, as a person begins to age, muscle and skeletal problems begin to worsen resulting in more pain, discomfort and limited mobility. Due to muscle flexibility, strength and endurance issues, there is a greater risk of falls and injuries. The following articles includes information on understanding how aging and adulthood affect people with cerebral palsy.
5 common challenges for adults with cerebral palsy- Made For Movement Blog
Adults and cerebral palsy– Cerebral Palsy Organization
Adults with Cerebral Palsy- Cerebral Palsy Foundation
Aging with Cerebral Palsy and Chronic Pain– The Mighty
Care of adults with cerebral palsy-American Academy for Cerebral Palsy and Developmental Medicine
Cerebral Palsy and aging– Developmental Medicine and Child Neurology
Cerebral palsy and transitioning to adulthood-Cerebral Palsy Alliance
Cerebral Palsy effects through lifespan-Physiopedia
Cerebral Palsy in Adulthood– Everyday Health
Cerebral Palsy patients provide rare insight into aging– Cerebral Palsy News Today
Cerebral palsy symptoms in Adulthood- Healthfully
Living as an adult with cerebral palsy– Healthline
March is Developmental Disabilities Awareness month! Although I blogged the definition of developmental disabilities here, I wanted to give you more information besides the Federal regulation. Quite often, people are confused between the definition of an intellectual disability and a developmental disability.
A developmental disability is described as an assortment of chronic conditions that are due to mental or physical impairments or both. For example, you may have a child or an adult with an intellectual disability or perhaps a person diagnosed with cerebral palsy and an intellectual disability. It is also considered a severe and chronic disability that can occur up to the age of 22, hence the word developmental. A developmental disability can occur before birth such as genetic disorders (i.e. cri du chat, fragile x syndrome,) or chromosomes ( i.e. Down syndrome, Edwards syndrome); during birth (lack of oxygen) or after birth up to the age of 22 (i.e. head injuries, child abuse or accidents).
The disability is likely to occur indefinitely meaning the person will require some type of ongoing service throughout their lives. Finally, the person must show limitations in 3 or more of the following areas of major life activities:
- Self-care– brushing teeth, hand-washing and combing hair independently
- Receptive and expressive language-ability to understand someone talking and to also be understood
- Learning– ability to read and write with understanding
- Mobility-ability to move around without any assistance
- Self-direction– time management, organization
- Capacity for independent living– requiring no supervision
- Economic self-sufficiency – having a job and purchasing what one needs
The following are links to articles on various types of developmental disabilities including resources with facts and statistics, organizations, and sign and symptoms.
According to the Epilepsy Foundation, epilepsy is the fourth most common neurological disorder and affects people of all ages. In fact, 1 in 26 people have seizures and while people who are diagnosed with epilepsy may have no other problems, this is not the case for children and adults with an intellectual and developmental disability where the rates are much higher.
It is estimated that 30% of children with epilepsy also have another type of disability. Some studies show that children with an intellectual disability and cerebral palsy, had a 35% chance of developing epilepsy, children with an intellectual disability alone had an 8% chance and children with a brain injury occurring after birth stood a 75% chance of developing epilepsy. Statistically, the risky of a child with a developmental disability experiencing an unprovoked seizure by age 5 is 4 times likely than the general population. It is estimated 1.8% of U.S. adults have epilepsy compared to 22% among people with intellectual disabilities.
People with intellectual disabilities tend to also have worse prognosis with adults having a higher rate of death including Sudden Unexplained Death In Epilepsy (SUDEP).
Epilepsy is a chronic disorder with recurrent unprovoked seizures. According tot he National Institute of Neurological Disorders and Stroke (NINDS), epilepsys are a spectrum of brain disorders ranging from severe, life-threatening to ones that are more benign. The International League Against Epilepsy created a new definition of epilepsy. A person is considered to have epilepsy if they meet any of the following conditions:
- At least two provoked (or reflex) seizures occurring greater than 24 hours apart.
- One Unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years.
- Diagnosis of an epilepsy syndrome
A seizure is defined as an event and epilepsy is the disease involving recurrent unprovoked seizures.
According to DSM-5, an intellectual disability is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual social, and practical domains including deficits in intellectual functions such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experiences. The severity levels range from mild to profound.
Although there is a high relationship between epilepsy and an intellectual disability, little research has been conducted on safe prescribing practices of an antiepileptic drugs for people with intellectual disabilities. What is known about epilepsy and an intellectual disability is that more severe disabilities are typically caused by damage to the brain
Why is it important to discuss?
Given the large number of people with an intellectual disability and epilepsy, treatment may be more complicated due to multiple impairments including people with a diagnosis of autism, intellectual disability and epilepsy. More research needs to occur which will help to reduce morbidity rates and help to develop accurate guidelines.
You are probably familiar with IEP’s if your child or family member attend a public school here in the United States. For some people with a developmental disability, the next step may be attending a day habilitation program where adults with developmental disabilities receive Medicaid Waiver Services and has what is called an Individualized Service Plan (ISP). If you are new the ISP process, the following terms that you will hear often before, during and after meetings.
Assessments. Serves to develop a body of information about an individual’s desires and goals his/her capabilities in areas in need of learning and skill development and the experiences or supports that will promote achievement of those goals.
Background/History. Provides an overview of the life experiences of the person and family.
Goals/Service. includes person-centered supports to enhance opportunities for individuals to make choices that increase their quality of life. An example would be a goal of increasing money or budgeting skills.
Interest and Activities. Describes personal preferences, gifts and interests, as well as conditions to avoid.
ISP Plan. A living document that provides details about what is important to an individual with developmental disabilities. It reflects a person-centered planning process.
Natural Supports. Personal associations and relationships developed in the community that enhance the quality and security of the life for people including family and friends.
Provider Program. The name of the voluntary agency delivering direct care to individuals with developmental disabilities. Providers may offer a variety of services and supports.
Habilitation Service. Services that help you keep, learn or improve skills and functioning for daily living skills
Individual Service Environment. Provides self-directed, individualized assistance and support to individuals living on their own, either alone or with roommates in their own home or apartment.
ISP Revision. Revisions and changes to the ISP can occur when an individual experiences a change in need throughout the year and must be reflected in the ISP. It is not necessary to wait annually to make the revisions. The date of the revisions should be reflected in the ISP.
HCBS Waiver Services. A Home and Community-Based Service (HCBS) Waiver is a Medicaid program designed to meet the needs of children and adults who prefer to get long-term care services in their home or community, rather than in an institutional setting.
Medicaid. is a jointly funded, Federal-State health insurance program for low-income and people in need including children and adults with disabilities. It is a government insurance for people whose income and resources are insufficient to pay for healthcare. A Medicaid number is needed for an ISP and is used to bill services.
Person-Centered Planning (PCP). An ongoing problem-solving process used to help people with disabilities plan for their future. It allows individuals to be engaged in the decision making process about their options, preferences and values.
Protective Oversight. is a documented and approved plan used for the sole purpose of enhancing individual safety. It list the key activities that affect health and wellness of an individual.
Safeguards. a measure taken to protect the individual from harm by providing information on how it will be addressed. An example is fire evacuation. If a person is not able to evacuate independently from a fire emergency, protections are put in place to ensure his or her safety.
Service Provider. The name of the voluntary agency delivering direct care to individuals with developmental disabilities. The provider may offer a variety of services and supports.
Value Outcome. Statements that represent what is important to the person. It may include what the individual needs, wants to change or would like to maintain in his/her life. Outcomes are developed through the ISP process.
This is an introduction to identifying street signs for children and young adults learning how to cross the street safely. The worksheet includes signs needed in teaching street crossing safety.
- Will match the traffic sign correctly
- Will identify the traffic sign correctly
- Will name the traffic sign correctly
Traffic sign worksheet
- Once you have printed the worksheet, cut the individual traffic signs and laminate.
- Explain each traffic sign and have the individual repeat.
- Once the signs are separated, mix them up and have the individual point to the correct ones.
- Have the individual state the traffic signs correctly and match
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.
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.
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.”
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.
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.