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

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

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

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

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 3-21. 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.

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

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.

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 www.pacer.org

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

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. www.dli.pa.gov

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 www.ssa.gov/disability

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 www.medicaidwaiver.org Apply through area agency on aging or your county’s assistance office disabilities

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 www.fivewishes.org -Addresses medical, personal, emotional and spiritual needs

Resources https://www.mda.org/young-adults https://www.mda.org/young-adults/resources http://quest.mda.org/news/thinking-college-think-scholarships http://www.myotonic.org/sites/default/files/Financial%20Resources%20fo r%20Families%20with%20DMPDF_1.pdf https://www.scholarships.com/financial-aid/collegescholarships/scholarships-by-type/disability-scholarships/ https://www.chop.edu/centers-programs/transition-adulthood-program/health-resources