ArtsAutosBooksBusinessEducationEntertainmentFamilyFashionFoodGamesGenderHealthHolidaysHomeHubPagesPersonal FinancePetsPoliticsReligionSportsTechnologyTravel

Where to turn for answers to a devastating situation?

Updated on August 10, 2016

When we are at a loss for what to do in an ethical situation.

Feeling alone.
Feeling alone. | Source

Frequently we hear it said ‘the worse thing that can happen to a person or couple is to have their child pass on before them’. After all, it just isn’t nature's way. No one is denying the loss of a child no matter the circumstances, is not natural and is something that many people do not ever get over.

There is arguably a situation that can be even worse. The situation is having a child unable to care for its own needs upon the passing of parents. When raising a child whether born with or due to an accident that will leave the child mentally or physically disabled. In so many cases, they will outlive the parents. When can they live without oversight, who will care for them when the parents are gone? As parents, we make every effort to give our children all the tools to be independent and thrive. So what happens if the child is incapable of mastering the life at hand? In our country's current financial state, the cost of caring for this child after the parents have passed is prohibitive.

We seem to be in the middle of an evolution due to financial and legal state. Eighty or ninety years ago a child with these disabilities was not believed to live past their teen’s, many according to medical professionals would pass before their fifth birthday. (This situation has evolved due to our medical discoveries and breakthroughs). Parents were told it was better financially and emotionally to institutionalize these children. The institutions housed both children and adults in the same living area. Children born with a disability and not placed in institutions many times did not ever leave their parents home. Parents were told not to educate them, ‘as they could not learn and retain the information’ this making life even more difficult for them.

There was, however, a flaw in this thought process consideration was not given for medical breakthroughs and the social climate. Our medical professionals had as of the 1950’s become very skilled at helping these children learn and thrive. Possibility not to the extent of living independently and providing for their own needs, although many do today. This situation brings us to waters uncharted. What happens to this population while living longer than anyone had thought, have not been given the tools to provide for themselves. Do the parents ask a sibling to become responsible for them, do we expect the state to care for them and keep their best interest at the forefront of the expectations.

Working with the Down’s Syndrome population we have learned some startling facts. When taken care of and given proper medical care and an education, they can live into their 80’s and longer. Yet again a new question. comes up, 'who is the responsible party to oversee the person providing for their well-being'? What financial and emotional climate makes up the 'parenting model' when all family members will very possibly be struck by this disability? Many of the disabled are stricken by a hereditary disease (i.e.Huntington's Disease, Sickle Cell, Cystic Fibrosis and so much more. These diseases clearly follow family blood lines, thus making the diagnosis even more devastating. The disease is horrific and the family unit is unable to meet all of the demands set forth. What parent can ask another child of this family to care for the disabled one financially, medically and socially? These situations are only minimal expectations of the family unit. Decisions regarding the care of young people when their parents pass are too frail to care for their children.

The financial plight alone is overwhelming. The medical needs are clearly outside of most familial units economic standing. What to do? The assisted living answer to this need seems like a good compromise to providing for the needs of the disabled. Until we look past the pretty bow and find their needs are defined somewhat differently than we expected. The young disabled have all the same needs and wants as any other person of the same age. The cost is prohibitive and few of us could come close to making this work in our family. What to do? Again we go back to history to define our process. In the 40’s, 50’s, 60’s, we made legal decisions for the care of our children should something happen to us prior to the passing of our children. So the situation became more widely observed better known, at the end of WWII.

Many fathers did not return from the war and a good number of the widows did not remarry. The saving pebble in this time was that most families still lived close enough together to help each other out. However, beginning in the mid-1950’ we, as a population, began our trek West. Now we were alone, except for friends, should we have a child unable to care for all of their own needs. Into the picture comes the Godparent(s) that was always there but now had a greater role in this family.

Where can we turn? This is a community issue not one families trial.

Most families will not ask for help to care for a disabled child. The lack of support leads to the parent’s failing health and so the ball begins to roll downhill. This article is not meant to have all the answer, rather it is meant to begin conversations regarding the need for solutions for a population quietly hidden from sight until the 1990’s. Not only families but also friends and communities need to have their views known to lawmakers.

Comments

    0 of 8192 characters used
    Post Comment

    • MGWriter profile imageAUTHOR

      Marsha Caldwell 

      2 years ago from Western Washington State

      Thank you Denise. I have worked with too many people who had failed to get everyone on the same page and then an emergency arises. You are so fortunate to have talked and working together. Many times family does not live close and it is even more important to have this conversation. Moving someone who is already having some problems then has the loss of primary caregiver(s). Neither the person nor the family has a positive outcome from the situation.

    • denise.w.anderson profile image

      Denise W Anderson 

      2 years ago from Bismarck, North Dakota

      You are right! We need to be having these conversations as families and communities. We have dealt with a mild disability in one of our own. She has been living with us, however, she is able to care for her own personal needs. Our children have agreed to have her come live with them should something happen to us or we be unable to provide for her care. I know of others, however, who have had to seek out community resources in order to provide for their own should they be unable to do so.

    working

    This website uses cookies

    As a user in the EEA, your approval is needed on a few things. To provide a better website experience, hubpages.com uses cookies (and other similar technologies) and may collect, process, and share personal data. Please choose which areas of our service you consent to our doing so.

    For more information on managing or withdrawing consents and how we handle data, visit our Privacy Policy at: https://hubpages.com/privacy-policy#gdpr

    Show Details
    Necessary
    HubPages Device IDThis is used to identify particular browsers or devices when the access the service, and is used for security reasons.
    LoginThis is necessary to sign in to the HubPages Service.
    Google RecaptchaThis is used to prevent bots and spam. (Privacy Policy)
    AkismetThis is used to detect comment spam. (Privacy Policy)
    HubPages Google AnalyticsThis is used to provide data on traffic to our website, all personally identifyable data is anonymized. (Privacy Policy)
    HubPages Traffic PixelThis is used to collect data on traffic to articles and other pages on our site. Unless you are signed in to a HubPages account, all personally identifiable information is anonymized.
    Amazon Web ServicesThis is a cloud services platform that we used to host our service. (Privacy Policy)
    CloudflareThis is a cloud CDN service that we use to efficiently deliver files required for our service to operate such as javascript, cascading style sheets, images, and videos. (Privacy Policy)
    Google Hosted LibrariesJavascript software libraries such as jQuery are loaded at endpoints on the googleapis.com or gstatic.com domains, for performance and efficiency reasons. (Privacy Policy)
    Features
    Google Custom SearchThis is feature allows you to search the site. (Privacy Policy)
    Google MapsSome articles have Google Maps embedded in them. (Privacy Policy)
    Google ChartsThis is used to display charts and graphs on articles and the author center. (Privacy Policy)
    Google AdSense Host APIThis service allows you to sign up for or associate a Google AdSense account with HubPages, so that you can earn money from ads on your articles. No data is shared unless you engage with this feature. (Privacy Policy)
    Google YouTubeSome articles have YouTube videos embedded in them. (Privacy Policy)
    VimeoSome articles have Vimeo videos embedded in them. (Privacy Policy)
    PaypalThis is used for a registered author who enrolls in the HubPages Earnings program and requests to be paid via PayPal. No data is shared with Paypal unless you engage with this feature. (Privacy Policy)
    Facebook LoginYou can use this to streamline signing up for, or signing in to your Hubpages account. No data is shared with Facebook unless you engage with this feature. (Privacy Policy)
    MavenThis supports the Maven widget and search functionality. (Privacy Policy)
    Marketing
    Google AdSenseThis is an ad network. (Privacy Policy)
    Google DoubleClickGoogle provides ad serving technology and runs an ad network. (Privacy Policy)
    Index ExchangeThis is an ad network. (Privacy Policy)
    SovrnThis is an ad network. (Privacy Policy)
    Facebook AdsThis is an ad network. (Privacy Policy)
    Amazon Unified Ad MarketplaceThis is an ad network. (Privacy Policy)
    AppNexusThis is an ad network. (Privacy Policy)
    OpenxThis is an ad network. (Privacy Policy)
    Rubicon ProjectThis is an ad network. (Privacy Policy)
    TripleLiftThis is an ad network. (Privacy Policy)
    Say MediaWe partner with Say Media to deliver ad campaigns on our sites. (Privacy Policy)
    Remarketing PixelsWe may use remarketing pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to advertise the HubPages Service to people that have visited our sites.
    Conversion Tracking PixelsWe may use conversion tracking pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to identify when an advertisement has successfully resulted in the desired action, such as signing up for the HubPages Service or publishing an article on the HubPages Service.
    Statistics
    Author Google AnalyticsThis is used to provide traffic data and reports to the authors of articles on the HubPages Service. (Privacy Policy)
    ComscoreComScore is a media measurement and analytics company providing marketing data and analytics to enterprises, media and advertising agencies, and publishers. Non-consent will result in ComScore only processing obfuscated personal data. (Privacy Policy)
    Amazon Tracking PixelSome articles display amazon products as part of the Amazon Affiliate program, this pixel provides traffic statistics for those products (Privacy Policy)