Support the Disability Integration Act

By Jeanine Gleba UOAA Advocacy Manager

    Sue Mueller, BSN, CWOCN

Does an ostomy qualify as a disability? This is a question that UOAA receives on occasion. You are living with an ostomy, you feel pride that you are independent with your ostomy care, that you are able to problem solve the glitches that arise, you have resumed your former activities and tried a few new ones…life is good.  So it’s confusing when you hear someone tell you that you qualify under the Americans with Disabilities Act (ADA) as having a disability. Perhaps you can walk and talk and see and hear and are independent with your care. You may envision a disabled person as someone who needs help with care, uses a wheelchair or a walker; someone obviously disabled. Well, elimination of waste is a major body function and your elimination of waste has changed; in fact you need to wear a prosthetic device (ostomy appliance) to manage this change. You have a record of an impairment of a major body function, therefore you are protected by the provisions of the ADA. You do not have a visible disability, and not all disabilities are visible. (Please be aware that the term disabled means different things in different systems i.e. in Social Security disabled means unable to work.)

Fast forward 15-20-30 years, you have aged and might be experiencing any number of the challenges that aging brings….combine that with ostomy care and you may find yourself in a whole new world trying to get your needs met and survive in the environment of your choice. That’s when you will be especially glad that you are protected by civil and disability rights legislation such as the Rehabilitation Act of 1973, the ADA, Olmstead vs LS, case law and provisions of the Affordable Care Act. Basically, what these legal documents establish is the expectation that people living with disabilities have the same opportunities as people without disabilities; to live and work and participate in their communities, that the same services and supports that are provided in institutions are provided in the community. Many improvements have been accomplished but the institutional bias in service provision has not been eliminated and the services needed to support non-institutional living have not been created.  The Disability Integration Act (DIA) has been proposed in both the US House and Senate as a measure to end institutional bias and promote services in the community and extend the principles established in previous legislation.

The act is bipartisan legislation that ensures people with disabilities have a federally protected right to live and receive services in their own homes or in the setting of their choosing. The DIA further secures our Constitutionally protected right to liberty by preventing disabled people from being forced into costly institutional settings by unnecessary government regulations.

In addition, the DIA assures the full integration of disabled people in the community by ensuring that people with an ostomy and other conditions are able to exercise real choice in where they wish to receive attendant services, assistance with health-related tasks such as “maintenance and use of a stable ostomy” or other services that enable a person with a disability to live in the community such as in an assisted living facility and lead an independent life.

Our patient bill of rights advocacy efforts have illustrated the gap in expectations and the reality of care.  An issue facing the ostomy community especially as they age is that most assisted living facilities (ALF) across our country will not admit someone with an ostomy or in the rare cases where they do, the ALF no longer needs to retain them once the individual can no longer perform self-care with emptying or changing their pouch. Once the door to assisted living is closed the only option is placement in a long-term care facility/nursing home. Assisted Living homes and nursing homes are radically different environments.

We believe that emptying a pouch is a simple activity of daily living that should fall under toileting assistance/hygiene.  When the issues with care at assisted living facilities result in an ostomate requiring long term care in an institution, when that is not their choice it is a civil rights issue and is exactly what the DIA is trying to address. UOAA supports and advocates for this landmark legislation and encourages the ostomy community to take action here to help us garner legislator support and pass this in 2019.

10 replies
  1. Susan Lowery
    Susan Lowery says:

    At age 59, and having a colostomy for 2 years, my quality of life is not as it should be. I have constant issues. I think it should be a disability.
    Thanks
    Susan

    Reply
  2. MayLynda Eads
    MayLynda Eads says:

    I had health issues that my doctor thought the colostomy would improve. My quality of life is worse, now I have a whole new set of issues with daily pain. Colostomy should be added to the list for those of us where the procedure impacted my life in a negative manner.

    Best regards,

    May

    Reply
  3. Bridgett Beardsley
    Bridgett Beardsley says:

    I have had my bag since age 16. I am now 42. I am so glad I found this article. I never really thought about being elderly with an ostomy. I don’t have any family that would know how to take care of it. Thanks for the information. Definitely looking into it more now.

    Reply
  4. Big Red
    Big Red says:

    My wife is an ostomate whom I love more than the air I breath. She / we deal with this life changing procedure as best we can. She occasionally has serious pain that requires emergency care due to intestinal blockage. She deals with this and many other related issues daily. All while trying live as close to a “normal” life as is possible. Normal is not possible. Enjoying life is, and I try to help her in that goal — always. That said, the proposed legislations mentioned here are necessary and should be approved without much argument. Can anyone tell me what is the current status of the 3 proposed legislations on this site? What / who is holding up passage and why?

    Reply
    • Contributor
      Contributor says:

      Your wife is blessed to have such a loving, supportive spouse!

      In response to your post from UOAA’s Advocacy Manager: The short version is simply that this is how the wheels of government moves….grindingly slow. It doesn’t help that we have a Congress that struggles to find common ground and compromise to pass legislation. The long version is that since we started advocating for this legislation, Disability Integration Act, the number of co-sponsors has grown through the efforts of many individuals. As of November 2020 Bill HR555 now has 238 co-sponsors. The bill still resides in the Subcommittee on the Constitution, Civil Rights, and Civil Liberties. Bill S117 now has 37 co-sponsors and has not moved out of the Committee on Health, Education, Labor, and Pensions. The end of the 116th Congress is only a couple of months away. There is not much calendar time left and between the election, pandemic, and holidays, I don’t anticipate further action on this legislation. To confirm this I contacted the organizers of the DIA. They informed me that this bill is not moving through the legislative process (no hearings, no mark-ups and no votes out of committees) and will not move as they have been told by House leadership and it is highly unlikely that Senate leadership will move this as well. All civil rights bills have multiple introductions in many congresses prior to passing. They will continue to work this bill in Congress, with advocates and in the media. However, like all civil rights bills (laws) this will take some time. It will have to be reintroduced in the next Congress. The same can be said for the other pieces of legislation we are advocating for. We continue to grow in the numbers of co-sponsors and will keep up the fight in the next Congressional Session regardless of which party is in power. Like your wife and the ostomy community, we must persevere. Please note that we provide updates to this legislation on this webpage. Thank you for your support!

      Reply
  5. Sk
    Sk says:

    I have just gotten an ileostomy and im already back in the hospital after the initial 23 day hospitalization where an Emergency surgery for a partial colectomy got me this bag. I woke up and was like WTH.

    So anyway im 2 months out and i got back to the hospital because my stoma stopped 100% producing output. No blockage was found but the small bowel is large and prob had a partial one that turned full somewhere in there. Took 12 days of being on a naso-gastric tube with NPO (no food no water) then im in pre-op for a stoma revision….and i kid not…output comes out. Is this my new life? Will this happen again and again? I dont fancy spending 3 weeks of every other month in the hospital with bills as much as a decent sized house each time. This really should be a disability. For me it prevents me from working 100% and im 32 years old. It also prevents my social life from existing and it causes me severe anxiety and depression which do qualify me for a disability. It also caused an added bonus of chronic (so far) intense lower back pain. Im sure it gets better (sarcasm) the longer i have this.

    Everyone who doesnt think it should be one should have one and then report back.

    Reply

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