Blog RSSBlog.

05/08/2018

Notice of Funding Opportunity: Bioethics and Disability

The National Council on Disability has posted the following Notice of Funding Opportunity: Bioethics and Disability.


NCD-18-02: Notice of Funding Opportunity for a Cooperative Agreement


Authority:  Section 401, Title IV of the Rehabilitation Act of 1973, as amended


Full Proposal Deadline: 5:00 p.m. (submitter’s local time), June 4, 2018. Late applications will not be considered.


Deliver 1 hard-copy of business and technical proposals to:


National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
ATTN: Ana Torres-Davis


Deliver electronic Word and PDF proposals to: atorresdavis@ncd.gov


Maximum amount available for this project: $130,000


All potential applicants are eligible to apply


Cost sharing is not required


The estimated period of performance is 10 months


Project Summary


The National Council on Disability (NCD) will seek proposals for a report series on bioethics and disability. The findings in these reports primarily serve to assist policymakers, including the White House and Congress, with the insight needed to make policy decisions designed to improve medical decision-making regarding persons with disabilities. The reports will also provide state legislatures, medical associations and educators, and persons with disabilities and those who support them, with an understanding of policy, legislation, and initiatives that impact their lives.


The report series will examine policies and practices related to the availability of medical interventions and life-saving medical care for persons with disabilities. It will examine five specific areas where disability and bioethics intersect, with a focus on how a person’s disability impacts medical decisions, including decisions to provide life-saving care. Topics are: organ transplants; medical futility; genetic testing for fetal disability; Quality Adjusted Life Years Analysis (QALYS), and physician assisted suicide. Each report will make findings on the current state of the topic and make recommendations for reform aimed at improving access to life-saving medical care for persons with disabilities, and improving the understanding of policy makers and the medical community on the value of the lives of persons with disabilities. 


Due to the diverse topics to be addressed in this report series, NCD encourages submissions that propose to join the expertise of several individuals and entities to conduct the scope of work. In the case of several contributing authors or entities, all report drafts must be coordinated by one individual or group to ensure that the writing is cohesive across each of the five reports. 


Agency Contact:


Ana Torres-Davis, Attorney Advisor, National Council on Disability, 1331 F Street, NW, Suite 850, Washington, DC  20004, telephone (202) 272-2019, e-mail: atorresdavis@ncd.gov.


Award Information


Anticipated Type of Award:  Cooperative Agreement


Estimated Number of Awards: 1


Anticipated Funding Amount:  $130,000


The funding amount is contingent on fiscal year 2018 funding availability.


Background and Issues 


Despite the growing understanding that disability is a normal part of the human experience, the lives of persons with disabilities continue to be devalued in medical decision-making. The devaluation of persons with disabilities has been widely recognized, and is apparent on the face of in laws and policies that allow hospitals and physicians to deny or withhold care based on subjective criteria on quality of life, such as denying a young boy a life-saving liver transplant because he has autism, and denying a life-sustaining medical treatment to a woman with quadriplegia because the medical team determines that she will be dependent on the care of others if she survives. It is heard in the advice given to families of persons with disabilities, or to persons with disabilities themselves, to forgo or end medical care rather than continue a life with a disability. And when a doctor describes to expectant parents that it will be expensive and emotionally burdensome if they choose to have a child that genetic tests show may have a disability. The devaluation is implicit in the lack of federal guidance making clear to the medical community that it is a violation of the Americans with Disabilities Act to discriminate in the provision of medical care based on a person’s disability.


Medical decisions that limit access to life-saving care or deny medical treatment to persons with disabilities based on the perception that a life lived with a disability has lesser quality and value – or no value – are discriminatory. While there are situations where there are legitimate grounds for not providing medical treatment – treatment should not be denied because a person has a disability. Sound medical decisions and advice should value the lives of all persons, whether disabled or not, and not use the person’s disability as the basis for a decision to withhold medical treatment or to assist in terminating a life. The presumption should always be in favor of treatment that could benefit the person, and to do no harm, just as it would be if the person did not have a disability, but anecdotal evidence and even scholarly articles on bioethics show that medical practitioners make subjective value judgments about the lives of persons with disabilities when making life and death decisions: “Who would want to live that way?” – “He will need care and supports his whole life.” Is it ethical for medical practitioners to make determinations based on their own values – values that go beyond medical practice? Do persons with disabilities, even severe disabilities, have the right to exist and face the challenges that life serves them just as non-disabled persons? Do they have equal rights to access life-saving treatments? And if not, what are the non-discriminatory reasons for denial?   


As medical technologies that keep people alive, even after sustaining serious injuries, continue to emerge, many more persons will live with disabilities. The development of advanced assistive technologies and increased societal accessibility enable persons with disabilities, even severe disabilities, to live and be active members of society. Will a “disabled” life continue to be devalued and medical options continue to be restricted, in some cases, denying the chance of life itself?  Or will medical ethics and practice evolve to embrace every life as one with infinite possibility and provide treatment to all persons without subjectivity and prejudice about disability?


Statement of Work


This five-report series will focus on bioethics issues that intersect with persons with disabilities, and the quality of life metrics that are used in health care decision-making as influenced by disability and medical perceptions of disability.


Each report will be no more than 50 pages long (not including endnotes) and must include:
1. A literature review
2. Current medical policies and practices in the United States
3. The relationship of the topic to, and ethical implications regarding persons with disabilities
4. A description of applicable federal laws and policies, and applicable state laws, including new or proposed federal or state legislation or policies
5. Recommendations to Congress, federal and state policy-makers, relevant federal agencies, and medical associations, through the social model lens of valuing the lives of persons with disabilities.


Report Topics


Organ Transplants


People with disabilities have faced significant barriers to accessing life-saving organ transplants since organ transplantation became a treatment option. Although the Rehabilitation Act of 1973 prohibits discrimination based on disability by entities receiving federal funds, and the Americans with Disabilities Act of 1990 (ADA) extended this protection more broadly to non-federally funded entities, it has been difficult to enforce federal disability protections in medical decision-making.


Transplant teams – doctors, nurses, psychologists and social workers – at over 800 U.S. transplant centers have almost full autonomy to make life-or-death decisions about who will get donor organs and who will be denied. These teams are free to take a person’s disability into consideration when deciding whether the person is eligible for a transplant. There is no federal guidance on this issue, and wide variation between programs. Some take mental, psychological, and developmental disabilities into account, while others do not, and some automatically rule out persons with disabilities.


Researchers have found significant differences in eligibility decisions based on intellectual disability and genetic disorders such as Down syndrome. Fundamentally, when physicians argue for denying transplants to people with disabilities, they are saying that non-disabled lives are more worth saving than those of disabled people.


In recent years, several high-profile cases have highlighted the disparities faced by people with developmental disabilities in need of life-saving organ transplants, causing public outrage and state legislative responses. Seven states have passed laws banning disability discrimination in organ transplant determinations, so that people with disabilities cannot be disqualified from receiving a transplant based on their disability alone if that disability is not medically relevant. Five of these laws were passed in past three years and several more states are currently considering bills to prohibit this type of discrimination.


In 2016, a bipartisan group of 30 members of the U.S. House of Representatives sent a letter to the U.S. Department of Health and Human Services’ Office for Civil Rights (HHS) urging it to address “persistent” organ transplant discrimination against people with disabilities. The letter requested guidance from HHS clarifying that denying an organ transplant based on a person’s disability would violate the ADA. In March of 2017, HHS responded that it is working to clarify the obligations of covered entities participating in the transplant process and to provide equal access to their programs to people with disabilities.


Policy Questions


What are the ethical, legal and medical positions/perspectives on organ transplants for persons with disabilities? 
How does current federal law and policy ensure equal access to medical treatments for people with disabilities? E.g., under the ADA, Rehabilitation Act, and any other applicable federal law and policy. Enforcement?
Which states have laws prohibiting discrimination in organ implants? What protections do they provide? Which states have proposed legislation?
How many organ transplant centers currently exist in the U.S.? How many are in states that have enacted organ transplant anti-discrimination laws?
What factors are most commonly considered by a transplant teams when deciding who may receive an organ? How common is disability used as a factor for ineligibility? What types of disability would result in a denial? What is the rational for deeming a person with a disability, such as autism, or other disability that would not impact the acceptance of an organ, from eligibility?
Have two of the oldest organ transplant anti-discrimination laws (California and New Jersey) improved the chances of people with disabilities to receive an organ? How so?
Medical Futility


In a 1997 opinion, the American Medical Association (AMA) Code of Medical Ethics describes medical futility in terms of end-of-life decision-making.  According to this opinion, physicians have an obligation to change the course of medical care when it becomes “futile.” Basically, “[w]hen further intervention to prolong the life of a patient becomes futile, physicians have an obligation to shift the intent of care toward comfort and closure.” Federal law provides a broader view – one that encompasses more than end-of-life decisions. The Uniform Health-Care Decisions Act states: “A health-care provider or institution may decline to comply with an individual instruction or health-care decision that requires medically ineffective health care or health care contrary to generally accepted health-care standards applicable to the health-care provider or institution.” It further clarifies that “medically ineffective” health care means “treatment which would not offer the patient any significant benefit.”


While medical futility is a well-established basis for withdrawing and withholding treatment, it is ethically controversial for several reasons, namely, that physicians may summarily claim a treatment is futile without knowing the relevant outcome data; there is no unanimity regarding the statistical threshold for a treatment to be considered futile; and there is often serious disagreement between physicians and families and surrogates regarding the benefits to the patient of continued treatment, with families and surrogates arguing that medical futility gives unilateral decision-making authority to physicians. Medical futility policies and practices have raised ethical concerns for persons with disabilities as news reports reveal that these policies have been applied to stop life-saving care to persons with disabilities – even the denial of antibiotics for a patient with cerebral palsy– cases where a treatment isn’t being removed or withheld because it won’t work, but because it is working, e.g., maintaining life. In such cases, it is the disabled person’s life that is seen as futile, not the treatment. This is not the purpose of the implementation of medical futility as it was intended – but extended to making value judgements on the continued life of a person with a disability.


Treating physicians may judge that a patient’s disability is relevant, e.g., when the disability may give rise to the need for treatment, or when it can reduce the likelihood that treatment for unrelated conditions will be effective. In both situations, the patient’s illness may so impair the patient’s quality of life that her treating physicians conclude that life-extending care would be cruel, pointless, or wasteful. But the ethical objections to taking disability into account arise when physicians act on their beliefs about a disabled patient’s quality of life.


Policy Questions


What are the ethical, legal and medical positions/perspectives on medical futility decisions as related to persons with disabilities?  Include decisions where the patient is not in a coma, but, for example, has any type of “severe” disability (i.e. quadriplegia, or a severe developmental disability).
How has the concept of medical futility developed over time, especially with the emergence of life-saving technologies? 
How prevalent are state laws on medical futility? Which states have enacted them and what do they provide? What was the reason/purpose for “codifying” the concept of medical futility?
Are hospital futility policies disclosed to patients and/or their families and surrogates? If not, why?
How does the Americans with Disabilities Act apply to decisions to stop or deny treatment based on medical futility?
Quality-Adjusted Life Years (QALYS) Analysis


The QALY is a broad population-based cost and cost-effectiveness analyses developed by health economists to measure and compare the benefits of healthcare interventions for cost effectiveness which is used to allocate health care resources. The use QALYs in health-care coverage decisions, rather than metrics that consider specific patient needs and heterogeneity, have resulted in discrimination against people with disabilities because QALY-based metrics often conclude that people with disabilities are not worth it – that their lives are not valuable – and result in denied access to health-care.


There are serious ethical concerns with how QALYs are developed and used. For example, it is well known that QALYs fall short in measuring health preferences for patients with chronic diseases and disabilities and place greater value on years lived in full health, or on interventions that prevent loss of perfect health while discounting gains in health for individuals with chronic illnesses. QALYS require valuing one individual’s life over another’s, which may result in only providing health-care to those that are deemed to have the greatest benefit from a treatment, such as a person who will fully recover and return to perfect health. Critics argue that a perfect state of health does not necessarily make a life more valuable – for example, one cannot assume that someone who has a disability cannot live as happily than someone who isn’t, and therefore is less entitled to health-care.


Additionally, people with disabilities may enjoy a comparable quality of life to non-disabled individuals, but may face a shorter life expectancy compared to someone without their condition. Because QALYs are assigned by both quality as well as quantity of life, an incremental QALY assessment would prioritize providing treatment to a nondisabled person with a longer theoretical life expectancy over a person with a disability. This is at odds with the idea that persons who may face a shorter life span should be able to enjoy the highest quality of life possible during that period.


Policy-makers have recognized the dangers of misusing cost-effectiveness standards in ways that undermine high-quality, individualized care for persons with disabilities. The Affordable Care Act explicitly prohibited the use of a quality adjusted life year (or similar measure that discounts the value of life because of an individual’s disability) as a threshold to establish what type of health care is cost effective or recommended. It further restricts the use of QALYs by prohibiting the Secretary of Health and Human Services from using a QALY as a threshold to determine coverage, reimbursement, or incentive programs in the Medicare Program. Further, as noted by leaders on the Second National Panel on Cost Effectiveness, “the problem of whether cost effectiveness analysis unjustly discriminates against the disabled remains a deep and unresolved difficulty for its use and QALYs to prioritize healthcare.”


State-run health systems have used QALYS to determine what services would be covered by their Medicaid program. In 1992, the U.S. Department of Health and Human Services (HHS) rejected the state of Oregon’s request to proceed with their prioritized list based on explicit cost-effectiveness ratios derived from QALYS because of its potential to discriminate against people with disabilities. In fact, the Secretary of the Oregon Department of Health and Human Services wrote an opinion to the New York Times stating, “Our principal concern is that Oregon’s plan in substantial part values the life of a person with a disability less than the life of a person without a disability. This premise is discriminatory and inconsistent with the Americans with Disabilities Act.” 


Policy Questions


How broad is the use of QALYS in the U.S? Who uses QALYS? State health insurance, private insurers? What policies have been developed based upon its use?
How do these policies impact access to health-care by persons with disabilities?
What has been and what is the current federal position on the use of QALYS?
Are there alternative cost assessment analysis tools that do not undervalue the lives of persons with disabilities? How widely are they used? What are the strengths and weaknesses from an economic perspective and equal access to care perspective?
Physician-Assisted Suicide (PAS)


NCD has long held that physician assisted suicide disproportionately harms people with disabilities, the elderly, and people who are poor and opens the door for insurance companies to provide PAS in lieu of costly treatment options.  In its 1997 report, Assisted Suicide: A Disability Perspective Position Paper, NCD detailed its position on the issue of physician-assisted suicide for persons with imminently terminal conditions, recognizing the benefits of permitting physician-assisted suicide, including for individual autonomy, liberty, and the right to make one’s own choices about matters concerning one’s intimate personal welfare; affording the dignity of control and choice for a patient who otherwise has little control of her or his situation; and, most importantly, giving the patient the ability to avoid severe pain and suffering. The Council found, however, that at that time, the benefits were outweighed by other realities and that the dangers of permitting physician-assisted suicide were immense. The pressures upon people with disabilities to choose to end their lives, and the insidious appropriation by others of the right to make that choice for them were prevalent and NCD believed that they would continue to increase as managed health care and limitations upon health care resources would precipitate increased “rationing” of health care services and health care financing. NCD recognized that people with disabilities were among society’s most likely candidates for ending their lives, as society has frequently made it clear that it believes they would be better off dead, or better that they had not been born. It pointed to the Netherlands as an example of how legalizing assisted suicide generates strong pressures upon individuals and families to utilize that option, and leads very quickly to coercion and involuntary euthanasia. NCD was concerned that if assisted suicide were to become legal, the lives of people with any disability deemed too difficult to live with would be at risk, and persons with disabilities who were poor or members of racial minorities would likely be in the most jeopardy of all.


In 2005, NCD issued a statement outlining legal developments in state laws that legalized assisted suicide reaffirming its position in opposition to its legalization, stating: It is critical that the rights of people with disabilities, old and young, to choose home and community based long term care services be fully implemented, consistent with Title II of the ADA and the U.S. Supreme Court decision in Olmstead. If individuals with disabilities feel that they have lost control in their lives, been devalued because of their impairments, and become a burden to others, the appropriate response from society is to support him or her to live independently in the community. Legalized medical killing solely based on disability should be rejected. People with disabilities are not better off dead, and society is not better off without us.”


Thirteen years have passed since NCD has examined the topic of assisted suicide in the U.S. This report would examine developments at the state and federal-level, court cases, and current views from stakeholders.


Policy Questions


Which states have PAS laws and what do those laws provide? What protections against abuse of PAS?
What have the Supreme Court and lower courts held regarding individuals’ rights under PAS laws? The laws themselves?
Is there evidence that persons with disabilities are being denied treatment by insurance companies but offered PAS instead, as NCD predicted?
How is PAS viewed by disability organizations? Has this evolved in the past 13 years? If so why? If not, why?
Are persons with disabilities that seek PAS denied? On what grounds? Are these grounds widespread/common across laws?
Have NCD’s previous recommendations on PAS been implemented? Which were implemented, which were not?
Genetic Testing for Disability


Genetic testing includes diagnostic and carrier testing. Diagnostic testing involves identifying current disease states. This includes prenatal and newborn screening—the most common forms of genetic testing. Carrier testing determines whether an individual carries a certain genetic trait. Examples of disorders for which genetic tests are available are Huntington’s disease, cystic fibrosis, breast cancer, Down’s syndrome, sickle cell anemia, and phenylketonuria.


There are ethical implications of genetic testing for disability because of the potential for discrimination. Long before genetic testing existed, genetic discrimination against persons with disabilities was common and endorsed by law. In the early to mid-1900s, individuals in the U.S. who were disabled were involuntarily sterilized so that they could not pass on genetic disabilities. In the well-known 1927 case of Buck v. Bell, Justice Oliver Wendell Holmes Jr., ruled that, Carrie Buck, a woman labeled “feebleminded,” would undergo involuntary sterilization so that she could not pass on her genes – denying her the chance to have children; assuring that a disabled child would not be born. This ruling upheld Virginia’s 1924 eugenic sterilization law. Approximately 60,000 more sterilization procedures were forced on women with disabilities throughout the U.S. following the decision. The highest authority in the land had made clear that children with disabilities had no value.


Genetic testing has now existed for decades. Recent developments in the genetic testing of fetuses include, for example, the Non-Invasive Prenatal (genetic) Diagnosis (NIPD) test, which experts say could be involved in 3 out of 5 million pregnancies in the U.S. soon. This test is administered during the first trimester and analyzes for thousands of genetic traits possessed by the fetus, and include not only genetic diseases such as Down syndrome and cystic fibrosis, but also variations for a range of traits and characteristics, including eye color. NIPD tests can also detect missing or extra chromosomes.


Genetic testing of fetuses raises several ethical issues for consideration. To begin with, the number of abortions in the U.S. could increase as expectant parents learn that their fetus carries the genes for disabling diseases or even physical traits considered undesirable. When testing for 100 traits or diseases, minor disorders could result in abortions. The fact that NIPD tests are conducted so early in pregnancy may well lead people to opt for abortion for any number of reasons. If an NIPD test indicates any “undesirable” traits, parents may decide to have an abortion based on their idea of a “perfect” child. They could also be used to prevent the birth of people with disabilities, which would in turn affect research, treatment, and support for people already living with disabilities.


Policy Questions


How prevalent is the use of genetic testing in the context of pregnancy? Is it ever required by insurance? Is it covered by insurance? Are insurance companies enacting policies to limit parental choices regarding carrying a child who might/does have a disability to term?
What information is provided to women whose tests reveal a marker for disability? Is counseling made readily available? What does it encompass?
How does federal and state law impact genetic testing? Federal policies? State policies? Court decisions? How have courts been involved, if at all, in the genetic testing area?
Who are the stakeholders and what are their views on genetic testing of fetuses?
What is the purpose and projected outcome of such testing from a public health perspective and those of stakeholders? 
The deliverables for this project will include:


Development of an invitee list and agenda for a convening of stakeholders to be held early in the development of the project to ensure key stakeholders are invested in the project and able to provide meaningful and timely input. Stakeholders include, but are not limited to: representatives of disability organizations that have conducted work or issued opinions on any of the report topics; ethics scholars; individuals with disabilities and their families; medical associations/organizations; and the US Department of Health and Human Services. NCD will provide substantial input into the development and hosting of the event.


A convening of stakeholders early in the project term.


Twenty interviews with key stakeholders, including: representatives of disability organizations that have conducted work or issued opinions in any of the topics; ethics scholars; individuals with disabilities and their families; medical associations/organizations; and the US Department of Health and Human Services.


Five detailed preliminary framing papers.


Revised framing papers incorporating input from NCD Council members and staff.


Initial drafts of reports incorporating findings, conclusions, and recommendations that can be drawn from the examination.


Second drafts of reports which will incorporate recommended input and revisions from NCD Council members and staff.


Final reports that incorporate input from NCD Council members and staff. Final reports must document methodology, findings, and recommendations and must include a separate section containing recommendations, organized according to the entity to which they are directed. 


Five case studies (one per topic) featuring individual or family experiences that are incorporated into the corresponding report. Case studies will be recruited and selected in consultation with NCD and the advisory panel. Case studies will be used to help the intended audiences to understand or possibly challenge theoretical assumptions gathered from the literature. 


A brief “Report Highlights” document for each report that succinctly and in plain language encapsulates the report’s scope and purpose, major findings, and recommendations, and contains a link to the full report at the bottom. For an example of a Reports Highlights Page, refer to: https://ncd.gov/publications/2013/10242013.  


Requirements


Creation of an advisory panel that represents stakeholders. The advisory panel will participate in planning, development, and execution of the project, including finalizing protocols for interviews. It will also provide input to awardee on framing papers and report drafts prior to submitting to NCD for review and input.


Each report must include a discussion of the social and medical models of disability and how each model impacts the treatment of, medical advice and counseling to, and the development of policies on the provision of life-saving care to people with disabilities.


All reports must fully adhere to NCD’s editorial requirements.


Any methodology used to obtain stakeholder input must allow for open-ended discussions between stakeholders, as opposed to soliciting answers to specific, predetermined questions.  While the use of data from existing surveys is permitted, conducting surveys for purposes of this study is strongly discouraged. The inclusion of people with disabilities must be integral to the planning, development, and execution of this project.  The report should also reflect NCD’s view that the disability community is heterogeneous, with diverse needs and perspectives, and those perspectives should be included.


The awardee is responsible for reasonable accommodations at any meetings, events, forums, focus groups, etc. (i.e. sign language interpreters, CART reporters, and other such providers, as well as documents or other materials that are made available in public forums), associated with this agreement.


The awardee will present before NCD at a quarterly Council meeting and must factor travel expenses into the proposed budget.


Eligibility Information


All potential applicants are eligible to apply.


Cost-sharing is not required.


Other Eligibility Criteria:  Proposals that merely offer to conduct a project in accordance with the requirements of the government’s scope of work will not be eligible for award.  You must submit an explanation of the proposed technical approach in conjunction with the tasks to be performed in achieving the project objectives.


This solicitation does not commit the government to contract for any work or services whatsoever. Respondents are advised that the Federal Government will not pay for any information or administrative costs incurred in response to this solicitation notice.  All costs associated with responding to this solicitation notice will be solely at the responding party’s expense. It is the responsibility of the interested parties to monitor grants.gov and ncd.gov sites for additional information.


Number of Awards


NCD expects to make 1 award with an anticipated funding amount of $130,000.


Due Date


Full hard-copy and email proposals must be submitted by 5:00 p.m. (submitter’s local time), June 4, 2018.


Submit a hard copy of a technical proposal and a business proposal to: National Council on Disability, 1331 F Street, N.W., Suite 850, Washington, DC 20004-1107. Attention: Ana Torres-Davis


Email Word and PDF versions of technical and business proposals to atorresdavis@ncd.gov.


Proposal Information and Instructions


Proposals must be submitted in two parts: A ‘Technical Proposal’ and a ‘Business Proposal. Each part shall be separate and complete so that evaluation of one may be accomplished independently of the other. The technical proposal must not contain reference to cost; however, resource information, such as data on labor hours and categories, materials, subcontracts, etc., must be contained in the technical proposal so that the offeror’s understanding of the scope of the work may be evaluated. It must describe the offeror’s technical approach in sufficient detail to provide a clear and concise presentation that includes, but is not limited to, the requirements of the technical proposal instructions.


Proposals must be signed by an official authorized to bind the submitting organization/s.


Alternate proposals or proposals which deviate from the requirements may be submitted; if they address the requirements in the statement of work, and if overall performance would be improved or not compromised, and are in the best interest of the Government. Alternate proposals, or deviations from any requirements of this funding opportunity, must be clearly identified.


NCD will evaluate proposals in accordance with the evaluation criteria set forth in this solicitation.


The winning proposal submitted in response to this solicitation will become part of the cooperative agreement.


A detailed work plan must be submitted indicating how each aspect of the statement of work is to be accomplished. The technical approach should contain as much detail as necessary to fully explain the proposed technical approach or method. The technical proposal must reflect a clear understanding of the nature of the work being undertaken.


The technical proposal must include information on how the project is to be organized, staffed, and managed. Information must demonstrate an understanding and describe the management of important events or tasks. The technical proposal must explain how the management and coordination of consultant and/or subcontractor efforts will be accomplished.


The technical proposal must include a list of names and proposed duties of the professional personnel, consultants, and key subcontractor employees assigned to the project. Their resumes must be included and should contain information on education, background, recent experience, and specific requirement related or technical accomplishments. The approximate percentage of time each individual will work on the project must be included. The proposed staff hours for each of the above individuals must be allocated against each task or subtask for the project.


The technical proposal must provide the general background, experience, and qualifications of the organization. Similar or related contracts, subcontracts, or grants should be included and contain the name of the customer, contract or grant number, dollar amount, time of performance, and the names and telephone numbers of the contracting officer’s representative or project officer and contracting/grants officer.


The technical proposal must contain a discussion of present or proposed facilities and equipment which will be used in the performance of the contract.


The technical proposal must contain a proposed timeline and “deliverables and payment schedule” chart which will be used to guide the conduct of the research. Payments will be based on 3 deliverables – with the last payment occurring after NCD approval of the final draft of reports.


Format of Technical Proposals


1. Abstract (no more than 2 pages)


A two-page summary shall be provided abstracting the proposal contents (e.g., objectives, activities, expected outcomes) in language understandable to an informed layperson. The narrative should be limited to no more than 250 words.


2. Table of Contents


3. Introduction (no more than 20 pages)


Offerors shall summarize, in their own words, the purposes and objectives of the project to demonstrate their complete understanding of NCD’s intent and requirements. This section also should contain a specific statement of any interpretations, questions, qualifications, limitations, deviations, or exceptions to the scope of work and the extent to which the offeror’s proposal can be expected to meet the requirements set forth in the scope of work.


4. Procedural Plan (no more than 40 pages)


This section shall fully describe the theoretical and technical approaches the offeror will employ in complying with each task in the scope of work. While a general statement of strategy is appropriate, the offeror shall be specific in describing the way the overall review will be conducted, and the intended approach to the design.


Contain a proposed timeline and deliverables schedule that will be used to guide the conduct of the study and monitor the work.


5. Management Plan and Schedule (no more than 15 pages)


The management plan shall show the feasibility of implementing the offeror’s resources. The offeror shall present a time chart that specifies the amount of time (in person days) each staff member will commit to implementing each task. The plan shall present a clear description of the working relationships among personnel. Finally, the plan shall contain a method for insuring the timely and successful completion of each work task.


6. Personnel


Personnel with major responsibilities shall be listed by name, title, position, academic background, relevant experience, responsibilities with the project, and the extent to which this commitment is assured. This section should include specific time commitments of staff to other projects, both Federal and non-Federal. Consultants who have agreed to serve on the project should be similarly identified and assurances of their commitment included. The Project Director shall be committed for no less than approximately 60 percent of the cooperative agreement. Vitae for all principal personnel, including consultants, should be appended to the proposal. Each curriculum vitae should be limited to not more than two (2) pages and should emphasize areas of experience directly relevant to this work statement.


7. Organization Experience


This section shall describe the offeror’s pertinent experience and qualification in conducting work of a similar nature. Offerors shall offer evidence of not more than 5 previous related assignments, including the names and telephone numbers of client project offices who would be able to comment on the offeror’s performance of those assignments. Summaries (not to exceed one page) of related work shall be included. References to products resulting from these related activities shall also be included.


8. Resources/Facilities/Equipment


This section shall identify those resources (other than personnel), facilities, and equipment (e.g., library holdings, computer hardware, and software) available for use in conducting this project. Offeror should address accessibility for people with disabilities.


9. Current Contractual Obligations


Each offeror will be required to outline both federal and non-federal contractual obligations existing during the time period of this award for all projects involving personnel who will be assigned to this project. Such organizations/agencies must be identified by name and the percentage of work time allotted to these projects by personnel committed to the proposed project must be provided.


10. Issues and Associated Data Items


When responding to the tasks and when identifying what should receive emphasis, careful consideration should be given to the issues identified, their associated data items, and the statement of products desired in the final reports.


All information provided by NCD must be returned to NCD upon completion of the analysis and no later than 10 working days after the completion of the cooperative agreement. The information may not be reproduced or released without the prior written permission of NCD.


11. Rights in Data, Copyright, and Disclosure


a. Data – The term data as used here includes written reports (progress, draft, and final), electronic format and work of any similar nature that is required under any resulting Cooperative Agreement to perform this project.  It does not include the awardee’s financial reports, or other information incidental to awardee administration. Data submitted to and accepted by the NCD under the cooperative agreement shall be the property of the NCD, and NCD shall have full and unlimited rights to use such data for any purpose in whatever manner deemed desirable and appropriate, including making it available to the public. Such use shall be without any additional payment to the awardee. Data may be published as the property of NCD without giving authorship to the awardee.


b. Copyright – The awardee relinquishes all copyrights and/or privileges developed under the cooperative agreement. The awardee shall not include in the data any copyrightable matter without the written approval of NCD, unless the awardee provides NCD with the written permission of the copyright owner for the NCD to use the matter.


c. Disclosure – The awardee agrees not to divulge or release any information, reports or recommendations developed or obtained with the performance of any cooperative agreement with NCD, and not otherwise available to the public, without the prior approval of the NCD.


d. Final approval of deliverables


All final deliverables are the product of NCD and require acceptance and approval by NCD.  NCD reserves the right to make substantive edits to all deliverables.


12. Award Information


NCD will make an award to the responsible offeror(s) whose proposal conforms to the solicitation and is most advantageous to the Federal Government.


Upon notification of intent to award, the offeror will be expected to consult with NCD to:


Finalize a mutually agreeable timeline and deliverables schedule that will be used to guide the conduct of the study and monitor the work;


Develop a payment schedule chart to be used for installment payments of the award based on 3 deliverables;


Meet with select NCD staff and board members at a pre-and-post award meeting.


13. Reporting


Throughout the project, the awardee and NCD Contracting Officer’s Representative will conduct mutually agreed upon monthly teleconference calls and/or biweekly meetings, set-up and arranged for by the awardee, to include other project staff members, NCD staff and, as appropriate, selected project advisors and NCD council members.


The awardee will provide monthly electronic progress reports to the NCD Contracting Officer’s Representative.


The awardee will present on its work before NCD at a quarterly Council meeting and must factor travel expenses into the project budget.


Business Proposal


The business proposal shall contain a detailed budget for the project and the certifications and representations required by OMB Circular A-110. 


Note:  For each type of entity, there is a set of Federal principles for determining allowable costs. Allowable costs shall be determined in accordance with the cost principles applicable to the entity incurring the costs. Thus, allowable costs incurred by State, local or federally-recognized Indian tribal governments is determined in accordance with the provisions of OMB Circular A–87, “Cost Principles for State and Local Governments.” The allowable of costs incurred by non-profit organizations is determined in accordance with the provisions of OMB Circular A–122, “Cost Principles for Non-Profit Organizations.”


The allowable costs incurred by institutions of higher education is determined in accordance with the provisions of OMB Circular A–21, “Cost Principles for Educational Institutions.” The allowable costs incurred by hospitals is determined in accordance with the provisions of appendix E of 45 CFR part 74, “Principles for Determining Costs Applicable to Research and Development under Grants and Contracts with Hospitals.” The allowable costs incurred by commercial organizations and those non-profit organizations listed in Attachment C to Circular A–122 is determined in accordance with the provisions of the Federal Acquisition Regulation (FAR) at 48 CFR part 31.


Technical Evaluation Criteria


Evaluation criteria will score proposals with a maximum of 100 points, divided as follows:


1. A clear understanding of the nature of the work (20 points)


The proposal presents a clear understanding of the tasks required and the importance, quality and reliability of those tasks. The proposal will present the rationale and/or interpretation of the project approach.


2. Procedural Plan (30 points)


The proposal contains evidence of a fully described technical approach to comply with each of the tasks in the scope of work. The proposal is consistent with the goals, objectives, compliance requirements, and is practical in terms of producing needed information, analysis and recommendations.


3. Management Plan and Schedule (20 points)


The degree to which the project team, including any use of consultants, is organized, managed, and motivated to accomplish effective and efficient implementation of all tasks to be completed. The proposal budget is appropriate to the administration of the project. The time frame is realistic. Plans and schedules to assure smooth cooperation with the NCD staff involved are evident. The proposal clearly identifies who will be key personnel and includes a table showing the number of person-days by tasks for each of the key personnel.


4. Personnel (15 points)


The proposal provides evidence of the specific qualifications and skills of staff and consultants to be assigned to this project, and their experience and familiarity with the topic, including relevant laws, regulations, procedures and practices in the Federal Government. Skills in writing, and conducting research should also clearly demonstrated.


5. Organizational Experience (15 points)


The proposal describes to which the overall experience and past performance of the offeror in executing similar projects should be described. Evidence of related assignments should be detailed. Offeror shall present evidence of related assignments, including the names and telephone numbers of previous project officers who would be able to comment on the offeror’s performance of those assignments.


Project Start Date


The projected start of the cooperative agreement is July 30, 2018. The projected end date is May 31, 2019. The projected due date for final drafts of the reports is May 13, 2019. 


Final drafts must be professionally edited before they are submitted to NCD.


Citations & Style Guide for NCD Reports


NCD requires awardees to utilize the Chicago Style Manual for reports and papers and employs the documentary note system of citation (otherwise known as notes and bibliography). An explanation of this style of citation can be found at: http://library.williams.edu/citing/styles/chicago1.php and http://www.chicagomanualofstyle.org/tools_citationguide.html.


Accessibility of Reports


NCD reports must be totally accessible to all people with disabilities at all iterative stages of its drafting and editing. All graphs and charts must have full text descriptions embedded as alt-text and ensure that it is Section 508 compliant. All drafts and final versions must be submitted in electronically in Word and PDF format.


Proposal Review Information


Reviews of proposals submitted to NCD are solicited from peers with expertise in the substantive area of the proposed project. At least three reviewers are selected by the NCD staff overseeing the review process. A conflict check is conducted to ensure that reviewers have no conflicts that prevent a review of offeror’s proposal. Special efforts are made to recruit reviewers from non-academic institutions, minority-serving institutions, or adjacent disciplines to that principally addressed in the proposal. Reviewers score and comment on each proposal. Reviews are treated as confidential documents. The NCD staff overseeing the review, examines the scores and comments, and formulates a recommendation.


Notice of Award


NCD will notify the offeror by telephone, e-mail, and/or letter. This will begin negotiations for a cooperative agreement. The notification is not authorization to begin performance. Notification of the award will be made by Ana Torres-Davis, an NCD Attorney Advisor. Organizations whose proposals are declined will be advised as promptly as possible. A summary of the strengths and weaknesses identified by reviewers, of each declined proposal, not included identifying names or information about proposal reviewers, will be made available upon request. 


About the National Council on Disability


Overview and Purpose


The National Council on Disability (NCD) is an independent federal agency comprised of a team of Presidential and Congressional appointees, an Executive Director appointed by the Chair, and a full-time professional staff. The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all people with disabilities regardless of the nature or significance of the disability and to empower people with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.


Specific Duties


NCD’s statutory duties are set forth at 29 USC §781, and include:


(1) provide advice to the Director with respect to the policies and conduct of the National Institute on Disability, Independent Living, and Rehabilitation Research, including ways to improve research concerning individuals with disabilities and the methods of collecting and disseminating findings of such research;


(2) provide advice to the Commissioner with respect to the policies of and conduct of the Rehabilitation Services Administration;


(3) advise the President, the Congress, the Commissioner, the appropriate Assistant Secretary of the Department of Education, and the Director of the National Institute on Disability, Independent Living, and Rehabilitation Research on the development of the programs to be carried out under this chapter;


(4) provide advice regarding priorities for the activities of the Interagency Disability Coordinating Council and review the recommendations of such Council for legislative and administrative changes to ensure that such recommendations are consistent with the purposes of the Council to promote the full integration, independence, and productivity of individuals with disabilities;


(5) review and evaluate on a continuing basis—


(A) policies, programs, practices, and procedures concerning individuals with disabilities conducted or assisted by Federal departments and agencies, including programs established or assisted under this chapter or under the Developmental Disabilities Assistance and Bill of Rights Act of 2000 [42 U.S.C. 15001 et seq.]; and


(B) all statutes and regulations pertaining to Federal programs which assist such individuals with disabilities; in order to assess the effectiveness of such policies, programs, practices, procedures, statutes, and regulations in meeting the needs of individuals with disabilities;


(6) assess the extent to which such policies, programs, practices, and procedures facilitate or impede the promotion of the policies set forth in subparagraphs (A) and (B) of section 780(a)(2) of this title;


(7) gather information about the implementation, effectiveness, and impact of the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.);


(8) make recommendations to the President, the Congress, the Secretary, the Director of the National Institute on Disability and Rehabilitation Research, and other officials of Federal agencies or other Federal entities, respecting ways to better promote the policies set forth in section 780(a)(2) of this title;


(9) provide to the Congress on a continuing basis advice, recommendations, legislative proposals, and any additional information that the National Council or the Congress deems appropriate; and


(10) review and evaluate on a continuing basis new and emerging disability policy issues affecting individuals with disabilities at the Federal, State, and local levels, and in the private sector, including the need for and coordination of adult services, access to personal assistance services, school reform efforts and the impact of such efforts on individuals with disabilities, access to health care, and policies that operate as disincentives for the individuals to seek and retain employment; and


Preparing and submitting to the President and Congress an annual report titled National Disability Policy: A Progress Report.


International


In 1995, NCD was designated by the Department of State to be the U.S. government’s official contact point for disability issues. Specifically, NCD interacts with the special rapporteur of the United Nations Commission for Social Development on disability matters.


Consumers Served and Current Activities


Although many government agencies deal with issues and programs affecting people with disabilities, NCD is the only federal agency charged with addressing, analyzing, and making recommendations on issues of public policy that affect people with disabilities regardless of age, disability type, perceived employment potential, economic need, specific functional ability, veteran status, or other individual circumstance. NCD recognizes its unique opportunity to facilitate independent living, community integration, and employment opportunities for people with disabilities by ensuring an informed and coordinated approach to addressing the concerns of people with disabilities and eliminating barriers to their active participation in community and family life.


NCD plays a major role in developing disability policy in America. In fact, NCD originally proposed what eventually became the ADA. To see NCD’s present and past work on issues that are key to the lives of people with disabilities, visit www.ncd.gov.


Statutory History


NCD was established in 1978 as an advisory board within the Department of Education (P.L. 95-602). The Rehabilitation Act Amendments of 1984 (P.L. 98-221) established NCD as an independent agency.


For General Information:
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax
www.ncd.gov

This entry was posted in Health Care and tagged . Posted by Thaddeus Mason Pope, JD, PhD. Bookmark the permalink.

Comments are closed.