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Independent Living News & Policy from the National Council on Independent Living

NCIL Policy on Healthcare & Community Living: Overview

Disability Integration Act

Protest sign - NCIL - Independence Rules! Sign features a drawing of the word independence in ASLEven though community-based services are overall more cost effective and the Supreme Court’s Olmstead decision requires community integration, people with disabilities are still forced into institutions and denied their inalienable right to liberty as guaranteed under the Declaration of Independence and Constitution. The Disability Integration Act – introduced during the 114th Congress as S. 2427 (Schumer-D) and H.R. 5689 (Gibson-R) – addressed this injustice by:

  • clarifying in statute that every individual who is eligible for Long-Term Services and Supports (LTSS) has a federally protected right to a real choice in how they receive services and supports;
  • assuring that states and other LTSS funders provide services and supports in a manner that allows individuals with disabilities to live in the most integrated setting (including their own home), have maximum control over their services and supports, and lead an independent life;
  • establishing a comprehensive state planning requirement, comparable to the transition planning process required under the ADA, that includes benchmarks;
  • requiring states to address the need for affordable, accessible, integrated housing that is independent of service delivery; and
  • establishing stronger, targeted enforcement mechanisms.

NCIL worked closely with ADAPT and others in crafting this legislation. We are working to secure reintroduction of this important legislation protecting the Constitutional and civil rights of Americans with disabilities.

Reform Medicaid, Don’t Gut It!

NCIL strongly supports reform of Medicaid (LTSS) in order to better serve people with disabilities and low income communities. Such reforms should promote consumer choice and also help ensure that disabled people who work are able to get and keep the LTSS they need to be independent. Medicaid is the primary payer for Long Term Services and Supports, which allow disabled individuals to live in the community instead of being denied their Constitutional right to Liberty. Instead of capping Medicaid LTSS or giving states more “flexibility” to deny Americans with disabilities their freedom through Block Grants or Per-Capita Caps, Congress should work with NCIL and the disability community to implement real Medicaid reform by:

  • Expanding the use of community-based services: studies have demonstrated that by reducing the over-reliance on institutions and nursing facilities and shifting toward more cost-effective community-based services, states can contain Medicaid spending;
  • Demedicalizing services: by reducing the reliance on costly medical personnel to provide assistance by allowing attendants to perform these tasks, states could use the same amount of Medicaid funding to support more seniors and people with disabilities living in their own homes;
  • Expanding consumer-directed service options: by empowering people to manage their own services and reducing the need for administrative overhead, states can also reduce Medicaid expenditures; and
  • Reorganizing Medicaid services to eliminate wasteful bureaucracy: the current system wastefully organizes services based on diagnosis and age, even though people may have the same functional needs. By organizing services based on functional needs, states can eliminate redundant and needlessly expensive bureaucracies and reduce Medicaid expenditures.

Healthcare

Although the Affordable Care Act is flawed, it does provide critically important access to health insurance for Americans with Disabilities. Additionally, the ACA addressed other critical healthcare issues for people with disabilities. Specifically, the ACA:

  • prohibited discrimination against people with pre-existing conditions by insurance companies;
  • extended Money Follows the Person, a Republican New Freedom initiative that is liberating thousands of disabled people from institutions, but that program is ending because of Congressional inaction;
  • established the Community First Choice Option (1915k), a Medicaid option that incentivizes states to provide LTSS in the community instead of nursing facilities and institutions;
  • authorized accessibility standards for Diagnostic Medical Equipment so people with disabilities could get access to preventative healthcare screenings and appropriate diagnostic testing.

NCIL urges Congress to maintain these important provisions of the ACA by addressing the problems with the existing law rather than repealing it.

Durable Medical Equipment (DME)

NCIL supports access to DME and opposes efforts to cut funding or restrict access, as this is a hindrance to the independence and integration of disabled people and seniors.

Competitive Bidding: The Centers for Medicare and Medicaid Services (CMS) created the ‘Competitive Bidding’ program for purchasing Durable Medical Equipment, Prosthetics, Orthotics, and Supplies (DMEPOS). While various Administrations have started and abandoned it, the program has been effect since the late 2000s and is now in Round 2. The program establishes rates for certain categories of equipment, but doesn’t require vendors to fulfill their contracts. Although it was intended to prevent fraud, cut costs, and reduce billing discrepancies through cuts to DME providers, it has instead resulted in a lack of local providers and delays in deliveries, which have lengthened hospital stays and driven up costs. Because of the problems we have already seen, NCIL has supported measures aimed at ending the CMS Competitive Bidding program, and supports similar efforts in this Congress. Consequently, NCIL supports the Medicare DMEPOS Competitive Bidding Improvement Act of 2015 as introduced during the 114th Congress – H.R. 284 (Tiberi-R) and S. 148 (Portman-R).

Complex Rehabilitation Technology (CRT): Additionally, Medicare currently does not have unique coverage for the more complex needs of individuals with disabilities and chronic medical conditions that require medically necessary, individually configured products and services. We believe the creation of a separate recognition of CRT will result in decreased Medicare expenditures by averting hospitalizations due to conditions such as severe pressure sores and blood clots. In the interest of quality healthcare and optimal functionality for individuals with disabilities and chronic medical conditions, recognition of a separate category for CRT is needed, so NCIL supports the Ensuring Access to Quality Complex Rehabilitation Technology Act of 2017 – H.R. 750 (Sensenbrenner-R).

Prohibiting Discrimination Based on Disability in Healthcare

Comprehensive implementation and enforcement of nondiscrimination laws, regulations, and principles will help reduce healthcare disparities based on disability and reduce the impact of societal prejudice and negative stereotypes on access to quality healthcare. Discrimination based on disability should be addressed through a combination of protection and advocacy enforcement efforts, regulatory development focused on preventing disability-based discrimination, and policy work guided by the principle “nothing about us without us.” Among the most urgent areas of concern:

  • discrimination due to inaccessibility of medical and diagnostic equipment or failure to provide effective communication and access to information to individuals with communication and sensory disabilities;
  • discrimination in policies and procedures concerning decisions to withhold or withdraw life-sustaining treatment, including but not limited to advance care planning that discourages the choice to receive life-sustaining treatment based on messages suggesting that it is “better to be dead than disabled”;
  • discriminatory “futile care” policies allowing healthcare providers to use quality of life judgments to overrule the decision to receive life-sustaining treatment made by individual, surrogate, or advance directive;
  • discriminatory relaxing of Constitutional and statutory constraints on the power of guardians to withhold or withdraw life-sustaining treatment from disabled people;
  • discrimination in organ transplant eligibility, organ procurement policies, and related services; and
  • discriminatory rush to judgment and denial of life sustaining treatment of newly injured persons based on hasty and unsupportable diagnosis of “persistent vegetative state” (PVS) earlier than 90 days for an anoxic brain injury, or one year for a traumatic brain injury, and before careful testing consistent with guidance from research studies on misdiagnosis of PVS.

Assisted Suicide

NCIL has long opposed the legalization of assisted suicide for many reasons. When assisted suicide is legal, it’s the cheapest treatment available – an attractive option in our profit-driven healthcare system. Terminal diagnoses and prognoses are too often wrong, leading people to lose good years of their lives. If one doctor says “no,” people can “doctor shop” for that “yes.” No psychological evaluation is required, putting depressed people in danger.

Highly-touted “safeguards” turn out to be truly hollow, with no real enforcement or investigation authority. Assisted suicide is a prescription for abuse: an heir or abusive caregiver can steer someone towards assisted suicide, witness the request, pick up the lethal dose, and even administer the drug – no witnesses are required at the death, so who would know? Many other pressures exist that can cause people with compromised health to hasten their death. Evidence appears to show that assisted suicide laws also lead to suicide contagion, driving up the general suicide rate. We all already have the right to good pain relief, including palliative sedation if dying in pain.

In Oregon and Washington, data indicates that people request assisted suicide for reasons directly related to disability-based oppression, such as feelings of loss of autonomy and dignity, and feelings of being a burden on others. These factors are the direct result of both negative stereotypes and public policies that deny people the consumer-controlled Long-Term Services and Supports (LTSS) that they need to feel respected and valued throughout life to a natural death.

Assisted suicide laws set up a double standard whereby most suicidal people get suicide prevention while certain others get suicide assistance. For those who are old, ill, or “disabled enough”, society will not only agree that suicide is appropriate but will provide the lethal means to complete the act. This form of discrimination violates the ADA and must be opposed. Because the dangers and harms are so significant, many national disability and medical organizations oppose assisted suicide laws, and many legislatures have repeatedly rejected them.

Mental Health

Mental health continues to have prominence in the news and in Washington after another year of gun violence blamed on people with psychiatric disabilities. NCIL recognizes that mental health disabilities are common – half of Americans can expect a diagnosis during their lifetime. NCIL also recognizes that people with disabilities, including those with mental health labels, are more likely to become victims than perpetrators of violence.

Congress has focused on legislation to restructure federal mental health laws over the last decade rather than deal with guns and violence. NCIL has concerns about many of these approaches and the lack of outreach and inclusion in such efforts. The voice of mental health consumers has been left out of these very important conversations and we cannot tolerate this.

NCIL calls on the Administration, Congress and other policy-makers to include persons with disabilities in this most important policy work. People with psychiatric disability must be represented in equal proportion to other stakeholders when developing mental health policy.

NCIL opposes all legislation or administrative action that continues or strengthens denial of rights based on a diagnosis or disability and deprivation of liberty based on disability rather than criminal activity.

In addition, advocates must be certain that legislation does not single out people who have a disability for involuntary treatment. Legislation should assure continued support for mental health peer support and advocacy.

Updated: March 23, 2017.