Health policy

John Delano, Jake Landreth, Jenna Breiner, Kyllie Tamaoka, Ali Vavruska HAP 334: Dr. Crawford 5 April 2017

BRIEFING Background/History Section 504 of the Rehabilitation Act

• First disability public policy was established in 1973 (Disability Rights Education & Defense Fund, 1992)

• Wanted federal agencies to cease discrimination against people with disabilities (Disability Rights Education & Defense Fund, 1992)

• First situation where Congress believed that people with disabilities have a lower social and economic status due to societal structures (Disability Rights Education & Defense Fund, 1992)

• Rallied together to get an agency to enforce regulations (Disability Rights Education & Defense Fund, 1992)

o Held sat-in at the Department of Health, Education and Welfare across the country (Disability Rights Education & Defense Fund, 1992)

o Was successful in enforcing regulations on May 14, 1977 (Disability Rights Education & Defense Fund, 1992)

President Reagan’s presidency • Created the Task Force of Regulatory Relief in order to “de-regulate” existing laws that

are taxing on businesses (Disability Rights Education & Defense Fund, 1992) • Interest groups gathered to convince congress to not deregulate Section 504 (Disability

Rights Education & Defense Fund, 1992) • Section 504 was not deregulated (Disability Rights Education & Defense Fund, 1992) • Courts continue to vote against people with disabilities (Disability Rights Education &

Defense Fund, 1992) • Disability Rights Education and Defense Fund (DREDF) hired lawyers who represented

people with disabilities (Disability Rights Education & Defense Fund, 1992) • Shift in thinking occurred when the lawyers hired by the DREDF won court case for

people with disabilities (Disability Rights Education & Defense Fund, 1992) American with Disabilities Act (ADA)

• Made into law in 1990 which banned discrimination against disabled people in regards to everything related to public life (Disability Rights Education & Defense Fund, 1992)

• Even though this law was past, majority of the population does not fully understand that people with disabilities need a greater amount of care than people without disabilities (Disability Action: Centre on Human Rights for People with Disabilities)

• This lack of understanding can hinder someone’s daily life and treatment to care (Disability Action: Centre on Human Rights for People with Disabilities)

Arguments & Evidence There have been many studies and surveys conducted that demonstrate discrimination action and behavior in regards to organ transplants for individuals with intellectual or developmental disabilities:

• 1992 Study of 411 transplant centers found: o Conducted by Virginia Commonwealth University - Department of Psychiatry

(Levenson, & Olbrish, 1992). o Individuals with IQs between 50 and 70 would be considered contraindicated

from receiving a heart transplant in 25% of transplant centers (Levenson, & Olbrish, 1992).

o 3 out of 4 transplant centers indicating absolute contraindication when patients have an IQ under 50 (Levenson, & Olbrish, 1992).

• 2006 review of the available research literature in Pediatric Transplantation: o Conducted by Ohio State University - Nisonger Center (Martens, Jones, & Reiss,

2006). o Little Scientific data exists that might support the idea that intellectual or

developmental disability would constitute a heightened risk of poorer outcomes (Martens et al., 2006).

o Provided necessary supports in postoperative regimen compliance were provided (Martens et al., 2006).

• 2008 survey of 88 transplant centers found: o Conducted by Stanford University - Center for Biomedical Ethics (Richards, La

Vera, & Magus, 2009). o 85% of pediatric transplant centers consider neurodevelopmental status as a factor

in their determinations of transplant eligibility at least some of the time (Richards et al., 2009).

o Heart transplant centers being more restrictive in their decision than kidney or liver programs (Richards et al., 2009).

• Heart Transplants in Children with Intellectual Disability: o Conducted by Stanford University - Center for Biomedical Ethics (Hollander,

2017). o 2568 patients under the age of 19 who underwent primary heart transplant

between 2008 and 2015 (Hollander, 2017). o Subjects were categorized as “definite,” “probable,” or “no” intellectual disability

(Hollander, 2017). o 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 (Hollander, 2017).

One of the major arguments against HB 21 is the concern for postoperative treatment and the capacity for the patient to follow through with the treatment.

• To ensure quality of postoperative treatment, children and adults may rely on family, friends or other community services.

• If the patient cannot afford the necessary care, than Medicaid should be sought: • Medicaid Funded Services (Organ)

o Personal Assistance o Home Health Aides o Case Managment o Teaching Skills o Respite Care o Transportation

If the patient does not qualify for Medicaid, the patient or surrogate should utilize the Individuals with Disabilities Education Act - IDEA (ORgan).

• All school-aged children under the age of 21 are eligible to receive educational services including (Organ):

o Administering Medication o Skilled nursing o Individualized Education Plan (IEP)

• Community Resources and Centers for Independent Living (CIL): o State Protection and Advocacy organizations (Organ)

§ Can access supports like Medicaid and school services o CILs provide independent living and health management skills training (Organ)

§ CILs also provide referral to community based supports

Organ donation list/registry

• There are local, state and national lists for organ donation • The donation list consists of complicated point system • There more points associated with the patient the higher the risk, therefore the higher on

the list o Children are always ranked higher than adults o Priority is based on individual factors o Potential patients are not compared to each other

• The list is just a database on patient information and medical history • Once a person receives a transplant, other people are not shifted to a new position

• Chart of the National organ recipient list from 1989 to 2009

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 o Grounds that there is probable chance of producing socially inadequate offspring o Was applied to a small amount of institutions to gage the success

• Carrie Buck - “feeble minded white woman” • Three generations of imbecility

State Comparison Delaware is not the first state to propose a law that addresses discrimination against individuals with disabilities in regards to organ transplantation. Four other states have succeeded in their efforts:

• California: 1996, individuals 18+ can donate an “anatomical gift” and the recipient of the donation cannot be denied based on physical or mental disabilities (AB 2861 Assembly Bill).

• New Jersey: 2013, criteria used by organ transplant centers must be fair and non- discriminatory when selecting organs for donation and transplant (P.L. 2013).

• Maryland: 2015, insurers, health service plans and HMOs can’t deny coverage of a disabled person in need of transplant (Maryland 2015).

• Massachusetts: 2016, disabled individuals can donate and receive organ donations without any discriminatory repercussions (Session Law).

In addition, three other states have a similar bill proposed by their 2017 legislatures:

• Pennsylvania: tried bill in 2015-2016 session, but failed. Now, it was reintroduced as HB 585 and is to prohibit discrimination against disabled people in need of organ transplant (Pennsylvania 2016).

• Kansas: HB 2343, ensuring non-discrimination of organ transplants by disability (HB 2343 | Bills and Resolutions | Kansas State Legislature).

• Oregon: HB 2839, prohibiting eye banks, tissue banks, procurement organizations, hospitals or physicians from considering any disability in potential recipients (Oregon Legislative System Information System).

What Happened on the Issue:

• House Bill (HB) 21 was introduced on January 5, 2017 by the 149th General Assembly in the State of Delaware (Legislature 25348).

• House Bill 21 came from the Health and Human Development committee. The primary

sponsor is Congresswomen Debra Heffernan with Senators Harris B. McDowell and Nicole Poore adding additional sponsorship (Legislature 25348).

• On January 18th 2017, HB 21 was reported out of committee with a vote of 4 favorable

and 9 on its merits (Legislature 25348). • The Health and Human Development committee drafted Amendment 1 to House Bill 21

on January 19th, which provided a mechanism for addressing discrimination in violation of this section in state court. This amendment was stricken down on March 28th (Legislature 25401).

• Amendment 2 to House Bill 21 was drafted and passed on March 28th. This amendment

re-words a portion of the declaration of intent to clarity that this Act is intended to prevent future discrimination rather than rectify any known past discrimination in this State (Legislature 25537).

• On March 28th, House Bill 21 was passed in the House with 38 yes votes, 2 no votes, and

1 absence (Legislature 25348).

• House Bill 21 is currently assigned to the Health, Children & Social Services Committee in the Delaware State Senate (Legislature 25348).

Works Cited

14th Amendment | Constitution | US Law | LII / Legal Information Institute. (n.d.).

Retrieved from https://www.law.cornell.edu/constitution/amendmentxiv

Alexander Tabarrok, Life-Saving Incentives: Consequences, Costs and Solutions

to the Organ Shortage | Library of Economics and Liberty. (n.d.). Retrieved from

http://www.econlib.org/library/Columns/y2009/Tabarrokliesaving.html

AB 2861 Assembly Bill - CHAPTERED. (n.d.). Retrieved from

http://leginfo.ca.gov/pub/95-96/bill/asm/ab_2851-

2900/ab_2861_bill_960701_chaptered.html.

Buck v. Bell | US Law | LII / Legal Information Institute. (n.d.). Retrieved from

https://www.law.cornell.edu/supremecourt/text/274/200

Disability Action: Centre on Human Rights for People with Disabilities. (n.d.). Retrieved April

4, 2017, from http://www.disabilityaction.org/fs/doc/advocacy-service-real-life-

stories.pdf

HB 2343 | Bills and Resolutions | Kansas State Legislature. (n.d.). Retrieved from

http://kslegislature.org/li/b2017_18/measures/hb2343/

Hollander, S. (2017). Heart transplantation in children with intellectual disability.

Pediartic Transplantation,21(2).

Legislature, D. (n.d.). Delaware General Assembly. Retrieved April 04, 2017, from

http://legis.delaware.gov/BillDetail?legislationId=25348

Levenson JL, Olbrisch ME. Psychosocial evaluation of organ transplant candidates: A

comparative survey of process, criteria, and outcomes in heart, liver, and kidney

transplantation. Psychosomatics 1992: 34: 314–323

Martens, Marilee A., Linda Jones, and Steven Reiss. “Organ transplantation, organ

donation and mental retardation.” Pediatric transplantation 10.6 (2006): 658-664.

Maryland. (2015). 383. In 2015 Maryland legislative review service.

Mayerson, A. (1992). Disability Rights Education & Defense Fund: The History of the American

with Disabilities Act. Retrieved from April 4, 2017, from

https://dredf.org/news/publications/the-history-of-the-ada/

Oregon Legislative Information System. (n.d.). Retrieved from

https://olis.leg.state.or.us/liz/2017R1/Measures/Overview/HB2839

Organ Transplants for People with Disabilities: A Guide for Clinicians [PDF].

P.L. 2013, c.080 (S1456). (n.d.). Retrieved from

http://www.njleg.state.nj.us/2012/Bills/AL13/80_.HTM

Pennsylvania. (2016). Retrieved from

http://www.legis.state.pa.us/cfdocs/billinfo/billinfo.cfm?sind=0&syear=2015&body=H&t

ype=B&bn=585

Richards CT, Crawley La Vera M, Magnus D. Use of neurodevelopmental delay in

pediatric solid organ transplant listing decisions: Inconsistencies in standards

across major pediatric transplant centers. Pediatric Transplantation 2009:13:843–

850.

Session Law. (n.d.). Retrieved from

https://malegislature.gov/Laws/SessionLaws/Acts/2016/Chapter328