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  • pALS Bill of Rights

    Posted by Amanda on April 6, 2021 at 9:49 pm

    How many pALS and caregivers have taken the time to read the pALS Bill of Rights created by The ALS Association?  Many of the rights are protected by laws.

    • The ALS Association’s Patient Bill of Rights and Responsibilities for People Living with ALS
      As a person living with ALS, you have the right to:
      1. You have the right to receive comprehensive information about ALS, including options and
      resources for your health care needs. This includes the right to communicate with your government
      representatives regarding policies and practices of the FDA, NIH, DHHS and other agencies that
      impact ALS. You have the right to receive information in a manner and language you understand
      from your healthcare providers and Medicare.
      People living with ALS have the right to obtain current, understandable information about:
      ● the identity of your healthcare providers include any students,
      ● anything unexpected and/or significant that happens to you during your hospital stay or
      course of treatment and care,
      ● the disease, its progression and prognosis,
      ● how to manage symptoms effectively,
      ● the full range of current treatment options including the known costs, benefits and risks,
      ● the availability of and individual eligibility for clinical drug trials,
      ● research advances into cause, treatment and cure, and
      ● policies and practices of federal agencies such as NIH, FDA and DHHS that affect ALS research
      and clinical care.
      People living with ALS have the right to comprehensive information about specific interventions and
      resources for:
      ● psychological or psychiatric counseling,
      ● spiritual counseling,
      ● employment issues and work-place support,
      ● products and techniques to:

        •  provide maximum mobility and range of motion,
        • support nutritional needs,
        • assist with activities of daily living,
        • continue communication, and
        • maintain ventilation and prevent respiratory complications.

    People living with ALS have the right to information about the following resources:
    ● ALSA certified Centers providing specialized, comprehensive care for people living with ALS,
    ● ALS clinics working in partnership with local ALSA chapters,
    ● ALSA support groups, chapters and National Office,
    ● local community sources for assistance and social services,
    ● government sources for information and services,
    ● national referral sources for information and assistance
    ● web sites and Internet sources of support and information, and
    ● other people with ALS who offer to speak with patients and their family members about living
    with ALS.
    2. You have a right to participate in decisions about your health care including the right to accept, discontinue or refuse treatments and therapy.
    People living with ALS have the right to participate fully in all decisions related to their health care.
    This includes the right to receive medical treatments for which you have the resources to pay —either
    through insurance or privately, or you qualify for a government or other health benefit program. It is
    acknowledged that some decisions are not in the sole purview of the patient, but all decisions should
    include an opportunity for active participation by the patient. Patients have the right to make informed decisions to institute, discontinue or decline treatments and therapies, as well as the right to change a decision at any time. Informed treatment decisions should be based on current, accurate and understandable information regarding the prognosis, treatment, cost and management of ALS. People with ALS have the right to make treatment decisions in advance of an urgent or emergency situation. Patient choices about treatments should be respected and supported by their health care professionals.
    Examples of treatment decisions a person with ALS may need to make include:

    • ● participation in a drug trial,
      ● medication therapy,
      ● alternatives to eating for nutritional support (P.E.G.),
      ● ventilation (breathing) support (non-invasive and tracheostomy),
      ● assistive, augmentative communication devices, palliative care, comfort care
      ● advance directives,
      ● end-of-life care — hospice, emergency interventions, palliative care, comfort care.

    3. You have the right to access ALS specialty care in a timely manner. (Not protected)
    People with ALS have the right to receive specialty care from health care providers credentialed,
    experienced and knowledgeable in treating patients with ALS. Patients have a right to ask for
    The ALS Association, 1275 K Street NW – Suite 250 – Washington, DC 20005,
    Phone: (800) 782-4747 / [email protected] /
    information about the credentials, experience and knowledge of their health care providers. The
    range of disciplines best equipped to provide experienced, knowledgeable ALS care and services
    include the following:
    ● neurologist specializing in ALS,
    ● gastroenterologists experienced in inserting percutaneous endoscopic gastrostomy (P.E.G.)
    ● mental health counselor
    ● occupational therapist
    ● orthotist
    ● physiatrist
    ● physical therapist
    ● psychologist (Ph.D.) or psychiatrist (M.D.)
    ● pulmonologist experienced with noninvasive and tracheostomy ventilation
    ● registered dietitian
    ● registered nurse
    ● respiratory therapist
    ● social worker (MSW or CSW)
    ● speech and language pathologist
    People with ALS have the right to information and services that are helpful in the management of ALS
    including psychological and social services, special equipment to support activities of daily living,
    communication and basic physiologic functions. Patients and their family members have a right to a
    reasonable choice of providers to ensure access to appropriate high-quality ALS health care. Access to
    specialty ALS providers should be timely for your information to make the diagnosis and initiate
    treatment and supportive care as quickly as possible. A second opinion from a qualified ALS physician
    should be available in a timely manner.
    4. You have the right to receive health care that is coordinated and individualized for you across the
    spectrum of home, hospice, hospital, nursing home, outpatient, and work-place. (Not protected)
    Patients have the right to receive the level of care appropriate to their needs in the setting that best
    meets their physical, financial, social and psychological situation. Continuity of care is important to
    persons with ALS and requires that health care providers and health plan personnel communicate
    with the patient on an ongoing basis regarding anticipated changes in the level and site of care — for
    example, home care, nursing home, hospice or hospital. Patients are encouraged to discuss necessary
    workplace accommodations openly with employers in order to be able to continue to work as long as
    possible. If you can perform the essential functions of your job, even if you require reasonable
    accommodations, your employer cannot discriminate against you with respect to your wages, hours,
    terms and conditions of employment.
    The ALS Association, 1275 K Street NW – Suite 250 – Washington, DC 20005,
    Phone: (800) 782-4747 / [email protected] /
    5. You have the right to access health care benefit coverage without discrimination based on your
    ALS diagnosis or physical disability.
    People with ALS who are eligible for health plan coverage under the plan’s terms and conditions, must
    not be discriminated against in enrollment practices or in the delivery of health care services based on
    disability. Insurers many not exclude anyone from coverage eligibility due to pre-existing conditions.
    Coverage may not be canceled due to an honest mistake on the part of a patient. You have a right to
    request an appeal of any denial of payment. Lifetime limits on most benefits are banned for new
    insurance plans beginning in 2014.
    6. You have the right to obtain clear, timely information regarding your health plan including
    benefits, exclusions and appeal procedures.
    People living with ALS have a right to timely, understandable information on a range of issues related
    to their health plan including:
    ● types and choices of health plans and cost of premiums,
    ● out-of-pocket expenses, catastrophic cost limits, and lifetime maximums,
    ● covered benefits and required authorizations, service restrictions and limitations on services
    or choice of health care provider,
    ● how coverage decisions (including drug formularies) are made and by whom,
    ● procedure for appeals and arbitration,
    ● cost of medications, services and equipment not covered by health plan,
    ● clear indication as to whether home care (skilled and unskilled), hospice and nursing home
    care are covered benefits.
    Patients have a right to a full and fair review of their benefit claims.
    7. You have the right to access your medical records and have the information in your records
    explained to you. (Not protected)
    People with ALS have the right to request and receive a copy of their medical records and to have the
    information in their records explained or interpreted in lay language.
    8. You have the right to prepare an advance directive to tell health care providers your wishes
    regarding emergency and end-of-life treatment choices.
    An advance directive is a document allowing a person to give directions about future medical care or
    to designate another person to make medical decisions if the individual loses decision-making
    capacity. Advance directives may include living wills, durable powers of attorney, right to die, or
    The ALS Association, 1275 K Street NW – Suite 250 – Washington, DC 20005,
    Phone: (800) 782-4747 / [email protected] /
    similar documents expressing the individual’s preferences as specified in the 1990 Patient
    Self-Determination Act.
    People living with ALS have the right to make advance directives concerning treatment with the
    expectation that the directives will be honored by health care providers. Advance directives refer to
    legal documents outlining a patient’s preferences regarding treatment choices such as tracheostomy
    and ventilation support. Terminology and interpretation related to the laws governing advance
    directives differ by state, but the overall purpose is to assure that individuals are treated with dignity
    and that treatment decisions are respected by their family and health care providers. Patients are
    encouraged to seek out information, laws and procedures in their state of residence.
    9. You have the right to receive care that is considerate and respects your dignity, your cultural,
    psycho-social and spiritual values and your privacy. You have this right no matter what choices you
    make about treatments and therapy, what your disabilities related to ALS might be or what your
    financial situation is.
    People with ALS have a right to receive considerate, respectful care and treatment without
    discrimination based on the ALS diagnosis, the related disabilities and limitations or financial
    10. You have the right to know that the information about you and your medical condition will be
    held confidential by your health care providers.
    Maintaining patient confidentiality is a basic responsibility and ethical obligation of all health care
    professionals and organizations. Patients have a right to have their medical records maintained
    confidentially by the professionals and organizations providing health care, unless the patient has
    agreed to waive confidentiality protection as when required for some research purposes. People with
    ALS have a right to communicate in confidence with their health care providers.
    11. You have the right to receive support to enhance or maintain your quality of life and have your
    family involved in all aspects of your health care.
    This includes:
    ● support to continue employment,
    ● social support to increase access to public spaces for maximum mobility — convenient
    parking, etc.,
    ● psychological support so that you will be able to continue to express your feelings, thoughts
    and ideas, and
    ● care and services provided in an atmosphere of hope.
    The ALS Association, 1275 K Street NW – Suite 250 – Washington, DC 20005,
    Phone: (800) 782-4747 / [email protected] /
    12. Patient Responsibilities – You have important responsibilities including:
    ● assure your healthcare providers have complete and correct information about you including
    your insurance coverage, health history and current health status.
    ● discuss your healthcare goals and values,
    ● inform family, friends and your healthcare providers who you have designated to make
    healthcare decisions for you if you become unable to make your own decisions,
    ● ask questions if your providers, healthcare institutions and your insurance company when
    there are things you do not understand,
    ● cooperate with your healthcare team in implementing the treatment plan you have decided
    to follow,
    ● actively participate in decisions about your health,
    ● become knowledgable about your health insurance plan including terms, coverage provisions,
    rules and restrictions,

    Marianne Opilla replied 3 years, 2 months ago 2 Members · 2 Replies
  • 2 Replies
  • Amanda

    April 6, 2021 at 9:51 pm

    As you can see, the ALS Patients Bill of Rights is long and extensive.  Please click the link for more information and a list of resources.

    What do you think of the Bill of Rights? Would you feel comfortable discussing your rights with your medical team?  Do you think that pALS need advocates when seeing medical professionals?

  • Marianne Opilla

    April 7, 2021 at 8:47 am

    Knowledge is power!  I made a video on my phone of my wishes.  I did this before losing my clear speech. Make sure you include full name and date of birth. Send copies to family.  Of course also have POAs set up.

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