{"id":4596,"date":"2024-03-11T15:27:32","date_gmt":"2024-03-11T15:27:32","guid":{"rendered":"https:\/\/alsoweb.org\/?p=4596"},"modified":"2024-03-11T15:27:32","modified_gmt":"2024-03-11T15:27:32","slug":"respecting-autonomy-in-healthcare-and-finance-part-2","status":"publish","type":"post","link":"https:\/\/alsoweb.org\/nonprofit-blog\/respecting-autonomy-in-healthcare-and-finance-part-2\/","title":{"rendered":"Respecting Autonomy in Healthcare and Finance (Part 2)"},"content":{"rendered":"

Respecting Autonomy in Healthcare and Finance (Part 2)<\/strong><\/h1>\n

Remember when you bought that expensive year-long gym membership and used it for two months? Or that expensive toy, gadget, or outfit that spent most of the time in your toybox, drawer, or closet? Have you ever overeaten and regretted it? Or stayed out late and kicked yourself in the morning? Dignity of risk<\/a> means learning from our experiences, and even (or especially) our mistakes. But people who experience intellectual and developmental disabilities (I\/DD) are often \u201ckept safe\u201d from making choices, effectively denying them their right to autonomy. \u201cThere’s this idea that we need to protect people with disabilities,\u201d says ALSO\u2019s CEO Brett Turner, \u201cbecause they’re a very vulnerable population (which we don’t disagree with), but this kind of inherent protection from family members and the system itself sometime results in people with I\/DD not having the dignity of risk that we all get to have.\u201d<\/p>\n

This can be especially true with decisions concerning financial or bodily autonomy. Darrin Barham ALSO\u2019s Supported Living Director asserts that it\u2019s not unusual for people supported by ALSO to disagree with their families about how to spend money. \u201cWe always have to go back to, \u2018This is their decision, and we need to support them, even if you\u2019re not on board,\u2019\u201d he says. \u201cWe all make decisions in our life that we regret. The people we support need to learn that same lesson.\u201d<\/p>\n

Autonomy and Informed Decision-Making<\/strong><\/h2>\n

\"A<\/p>\n

Luckily, at ALSO decisions are not made in a vacuum. Part of supporting people with I\/DD is facilitating informed decision-making<\/a>. Sometimes this support can be a casual conversation. \u201cI get to make my own decisions about what I eat,\u201d says Glenda, one of the individuals ALSO supports. \u201cI am independent, so staff doesn\u2019t say stuff like, \u2018You can\u2019t have that,\u2019 but they do try to let me know it might not be the healthiest.\u201d<\/p>\n

Sometimes a structured and collaborative conversation can be more effective in facilitating autonomy and decision-making. \u201cWe talk openly as a group (that includes staff, family members and the person supported) and say, \u2018Here are some pros and cons,\u201d says Darrin. \u201cThe team concept really works wonders. When there’s more people involved there are different points of view\u2026and it really is a great opportunity to get a true sense of what\u2019s going on from every angle\u2026That way you don’t walk away from a meeting feeling like somebody wasn’t heard.\u201d<\/p>\n

Ensuring communication is critical, especially when the person is unable to communicate with words. \u201cImagine going to a doctor’s office with no information about why you were there,\u201d says Harry Norris, a Behavior Support Specialist at ALSO. \u201c If someone came at you with a needle without explaining why, what reaction would you have?\u201d he states.<\/p>\n

Harry often uses social stories<\/a> to verbally and visually explain new situations. \u201cI might use a narrative from the individual\u2019s point of view, something along the lines of, \u2018I’m going to the doctor today and we’re going to talk about my diagnosis of GERD. I need to tell them that it’s been bothering me and what my symptoms are, and I’d like to fix it so it doesn\u2019t bother me.\u2019\u201d Social stories helps break down situations into easily digestible bites, and can always be expanded if the person is interested in learning more.<\/p>\n

Medical and Bodily Autonomy<\/strong><\/h2>\n

Bodily autonomy\u2014the ability to make decisions about what to do with our bodies\u2014is a human right, and one that \u201cis too often denied to persons with disabilities, whether through harmful social norms or through sheer and unacceptable lack of access to quality, and confidential, health care,\u201d according to the United Nations Population Fund<\/a>. Jamie, an individual supported by ALSO, has first-hand knowledge of those social norms in healthcare. \u201cThey see the wheelchair first,\u201d he says. \u201cI talk slow, so they think I\u2019m slow\u2026They don\u2019t take to time to listen to me.\u201d His Direct Support Professional agrees. \u201cGetting his primary care provider to give him time is really something,\u201d states Harry. \u201cIt’s almost expected that it (disrespect by medical professionals) is going to happen,\u201d says Harry, \u201cso sometimes people won’t speak up for themselves.\u201d It\u2019s a problem that goes beyond self-advocacy<\/a>, as the lack of information can lead to misdiagnoses or medication issues.<\/p>\n

Knowledgeable caregivers can support autonomy in healthcare settings. \u201cI do make my own decisions about my own healthcare,\u201d says Glenda, \u201cbut I also have a staff that stays with me at the doctor\u2019s, so I can ask them to repeat what the doctor\u2019s saying or explain it in a way I can understand. Or if the doctor \u2018s not understanding me because I have autism, I\u2019ll have my staff help me get it so that the doctor understands me better.\u201d<\/p>\n

Though staff can provide support, it\u2019s important that individuals exercise their right to bodily autonomy. \u201cIf an individual doesn’t take an active role in their healthcare,\u201d says Harry, \u201cthere\u2019s an increased chance of doctors dismissing their decisions or deciding what they want.\u201d There can be times when a person experiences a significant decline in health, safety, or quality of life and they are unable to make a choice for themselves. At this point, ALSO would probably advocate for a healthcare representative to support the individual. \u201cIdeally, we want to continue to support the person in their medical autonomy,\u201d says Harry, \u201cand restricting this should only be done as a last resort.\u201d<\/p>\n

Autonomy and Financial Empowerment<\/strong><\/h2>\n

\"A<\/p>\n

Finances are another area where informed decision-making is critical. \u201cWhen someone doesn’t really know a lot about their money or really understand the value of the dollar, that puts them at risk of being exploited by others,\u201d Harry says. Sometimes, the exploitation is subtle. \u201cAll the time, people want me to buy things I don\u2019t want to buy,\u201d Jamie says, \u201cI say, \u2018Not today,\u2019 or \u2018I know it\u2019s cheaper somewhere else.\u2019\u201d<\/p>\n

The Consumer Financial Protection Bureau (CFPB)<\/a> lists several attributes that put people at higher risk of identity theft, financial abuse, and financial exploitation, including:<\/p>\n