1. Palliative Care: Improving Quality of Life at Every Stage
Cynthia Clyburn, MSW

2. Key Concepts Defining Palliative Care Pediatric Care
School Support/ IDEA
Support for Caregivers
Higher Education
Transitioning from Pediatric to Adult Care
Establishing Independence
Vocational Support
Advance Care Planning

3. What is Palliative Care?
Person and Family-Centered medical care for individuals living with serious illness
A team of doctors, nurses, therapists, social workers, and other professionals working together to meet medical and psychosocial need
Goal is to improve quality of life
Can be implemented at any stage of the disease
getpalliativecare.org

4. Childhood Medical Care- Psychological and Emotional Support-
Access to diagnostic information, appropriate medical team, treatment
Psychological and Emotional Support-
Access to supportive counseling, play therapy, speech therapy, occupational therapy, respite care, and more

5. Childhood
IDEA- The Individuals with Disabilities Education Act (IDEA) is a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children.
Part C- Infant and Toddler Services (Birth-age 2)
Part B- Ages Early Childhood Special Education and School Age. (IEP)
Since 1976, the United States has established the Individuals with Disabilities Act. This is a law that makes available free public education to eligible children with disabilities. It ensures access to special education and supportive services to children.
Part C- Infant and Toddler Services--- Focuses on education and support for families.
Part B- Early Childhood education through school age. This provides opportunities for special education and other supportive services through school. There is a focus on therapeutic services including PT, OT, speech therapy, play therapy, and more. Many models of special education integrate typically developing students with children living with disabilities. An Individualized Education Program is specifically tailored in collaboration with the student, family, principal, teacher, and department of special education.

6. IDEA- Who Qualifies? Autism Deafness Blindness Emotional Disturbance
Intellectual Disability
Multiple Disabilities
Orthopedic Impairment
Other Health Impairment
Learning Disability
Speech/Language Impairment
Traumatic Brain Injury

7. Section 504 -Civil Rights Legislation
- Federal law under Rehabilitation Act
-Provides accommodations, not special education
- Preferential Seating
- Note taker
- Accessible Transportation
- Extra time to complete tests
- Rest periods
- Someone to push wheelchair
- Quiet space to take tests
Section 504
Section 504 of the Rehabilitation Act states: “No otherwise qualified individual with a disability in the United States shall solely by reason of her or his disability be excluded from participation in, be denied benefits of, or be subjected to discrimination under any program or activity receiving Federal Financial assistance.
Covers qualified individuals with disabilities ages 3-22.
A qualified individual is someone with a mental or physical impairment that substantially limits one or more major activity, has a record of such an impairment, or is regarded as having such impairment. An impairment is seen as any disability that limits or lessens a students access to learning due to behavior, learning disability, or health related condition.

8. Teenage/Young Adulthood
Higher Education and Section 504
Colleges and Universities that receive federal education funding are required to accommodate students living with disabilities.
Provide student aids
Accessible buildings
Extra time to complete tests
Accessible transportation
Allowing service animals
Allowing financial aid, even for part-time students
National Parent Center on Transition and Employment

9. Transitioning Care Meeting with medical teams
Begin discussion early (14, 15 years old)
Collaborate with interdisciplinary teams
Gain an understanding of the supports/services/specialities offered
Provide medical records, genetic testing, equipment, insurance information, etc.
Addressing Holistic needs of person/family
Address housing, education, employment, relationships, mood, etc.
Establishing independence
Empower youth to take charge of their own medical care

10. Adulthood
Vocational Rehabilitation- Offices designed to help individuals living with physical or mental disabilities obtain or retain employment.
Offers case management
Individualized plans
Advocacy for reasonable accomodations
Assistive technology
Training, counseling, placement assistance
Assistance with tuition, driving accommodations, transportation, etc.

11. Navigating Insurance, Social Security Income
-Social Security Income- Pays monthly income to those 65+ and individuals living with disabilities
- Under 18- based on parents assets
- Diagnosed before 22- can receive social security disability
- Can receive SSDI based on earnings
-PASS- Plan for Achieving Self Support
-ABLE Account
- Vocational Rehab and SSI incentive to work programs
Navigating Insurance, Social Security Income

12. Medicaid Waivers Every state offers a medicaid-funded waiver program
Designed to keep “skilled nursing eligible” individuals with disabilities in their own communities
Home Care Aids
Home Modifications
Case Management
Meal deliveries
Assistive devices
Access to more services and therapies
Medicaid Waivers
Apply through area agency on aging or your county’s assistance office disabilities

13. Advance Care Planning Emergency Care Planning
Listing your providers (neurology, pulmonary, cardiologist)
Note cards to explain anesthesia requirements
Advance Directives
- Power of Attorney
-Five Wishes
Advance Care Planning
-Addresses medical, personal, emotional and spiritual needs

14. Resources https://www.mda.org/young-adults
r%20Families%20with%20DMPDF_1.pdf