Health policy
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delawawer21.pptxDelaware HB 21:
Ensure individuals with disabilities are not denied access to organ transplant services
Jake Landreth, John Delano, Jenna Breiner,
Kyllie Tamaoka, Ali Vavruska
Section 504
1973 - Section 504 of the Rehabilitation Act
Banned discrimination on the basis of disability by recipients of federal agencies
Recognized that lower social and economical status of people with disabilities was a result of societal barriers and prejudices
Forcing an agency to issue regulations
Disabilities Sat-in at the Department of Health, Education and Welfare (HEW)
Regulations were issued on May 14, 1977
Setbacks
President Reagan
Established the Task Force of Regulatory Relief
“De-regulate” regulations that were burdensome to businesses
For two years, representatives from the disability community met with officials to state why the Section 504 should not be deregulated
Was successful but most courts did not take Section 504 seriously
The Disability Rights Education Defense Fund (DREDF) hired lawyers
Americans with Disabilities Act (ADA)
Established in 1990
Prohibits discrimination against individuals with disabilities in all areas of public life
Employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications
Access to Healthcare
Most people do not realize that people with disabilities need a higher amount of care than people who do not have disabilities
Ann’s story - went through cancer treatment with a physical impairment
Fiona’s story - challenges with her wheelchair
Rachael’s story - had multiple disabilities including Autistic Spectrum Disorder
Arguments and Evidence:
1992 Study of 411 transplant centers found:
Conducted by Virginia Commonwealth University - Department of Psychiatry
Individuals with IQs between 50 and 70 would be considered contraindicated from receiving a heart transplant in 25% of transplant centers
3 out of 4 transplant centers indicating absolute contraindication when patients have an IQ under 50
Arguments and Evidence:
2006 review of the available research literature in Pediatric Transplantation:
Conducted by Ohio State University - Nisonger Center
Little Scientific data exists that might support the idea that intellectual or developmental disability would constitute a heightened risk of poorer outcomes
Provided necessary supports in postoperative regimen compliance were provided.
Arguments and Evidence:
2008 survey of 88 transplant centers found:
Conducted by Stanford University - Center for Biomedical Ethics
85% of pediatric transplant centers consider neurodevelopmental status as a factor in their determinations of transplant eligibility at least some of the time
Heart transplant centers being more restrictive in their decision than kidney or liver programs
Arguments and Evidence:
Heart Transplants in Children with Intellectual Disability:
Conducted by Stanford University - Center for Biomedical Ethics
2568 patients under the age of 19 who underwent primary heart transplant between 2008 and 2015
Subjects were categorized as “definite,” “probable,” or “no” intellectual disability
Found no difference in patient or graft survival over a 3-year follow-up period, the author concluded that intellectual disability may not be a contraindication
What Qualifies as Quality Postoperative care?
Children and adults with disabilities may rely on family, friends, or other unpaid supporters for assistance managing their health care.
Medicaid Funded Services
Personal Assistance
Home Health Aides
Case Managment
Teaching Skills
Respite Care
Transportation
Postoperative Care Continued:
Individuals with Disabilities Education Act - IDEA
All school-aged children under the age of 21 are eligible to receive educational services
Administering Medication
Skilled nursing
Individualized Education Plan (IEP)
Community Resources and Centers for Independent Living (CIL):
State Protection and Advocacy organizations can access supports
CILs provide independent living and health management skills training
Also provide referral to community based supports
Organ Recipient List
There are local, state and national lists for organ donation
There more points associated with the patient the higher the risk
Children are always ranked higher than adults
Priority is based on individual factors
Potential patients are not compared to each other
The list is just a database on patient information and medical history
14th Amendment
All persons born or naturalized in the United States, and subject to the jurisdiction thereof, are citizens of the United States and of the state wherein they reside. No state shall make or enforce any laws which shall abridge the privileges or immunities of citizens of the United States; nor shall any state deprive any person of life, liberty or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of laws.
Buck vs Bell
No. 292
Argued April 22, 1927
Decided May 2, 1927
Sexual sterilization of inmates institutionalized on grounds of insanity and imbecility under the 14th Amendment
Grounds that there is probable chance of producing socially inadequate offspring
Was applied to a small amount of institutions to gage the success
Carrie Buck was considered “feeble minded”
Three generation of imbecility
There are multiple donation lists ranging from local, state and national. The ranking system is done by a series of complicated point systems; the higher the points associated with a patient the higher the risk of potential death(site). According the 14th Amendment no state is allowed to enforce or create a law that infringes on the basic rights of citizens; also no state is allowed to deprive a citizen of the United States. Additionally, it is crucial to be aware of the law voted on by the Supreme Court on May 2 ,1927 allowing sterilization of institutionalized disabled.
State Comparison
California
New Jersey
Maryland
Massachusetts
State Comparison
Pennsylvania
Kansas
Oregon
Who’s Running the Show?
Committee: Health and Human Development
Primary Sponsor: Representative Debra Heffernan
Additional Sponsors: Senators Harris B. McDowell & Nicole Poore
Legislative Process in Delaware
Timeline
Jan. 5, 2017
Jan. 18, 2017
Jan. 19, 2017
March 28, 2017
So…..
Where is
House Bill 21
Today?
