Having a child with complex medical needs is a difficult enough position to find yourself in as a parent.
Fighting to provide your child with the best quality of life possible and meeting adversity nearly every step of the way makes that difficulty feel nearly impossible.
Complicate the circumstances even more by hindering accessibility of resources and services and creating varying levels of availability from one community to another; a challenge a little more expected when you're dealing with other countries but very much present here in the US as well. There are currently no laws mandating the availability of resources that help families when extra services are necessary for their child with complex medical needs.
Last May, our friends at Disability Scoop shared the following details on the alarming comparisons between states here in the United States and the facts were both enlightening and alarming to me personally since our journey with Brayden took us through 4 states in 4 years:
States Get Ranked On Disability Services
By Michelle Diament
Arizona is the place to be when it comes to services for people with intellectual and developmental disabilities, according to a new national ranking.
The listing is part of a report set to be released Thursday by United Cerebral Palsy, which ranks disability services in all 50 states and the District of Columbia.
Specifically, the advocacy organization weighed each state’s track record in promoting independence and productivity, ensuring quality and safety, keeping families together and reaching people in need.
In addition to Arizona, the highest ranked states were New Hampshire, Oregon, Vermont and California.
Top performing states were largely clustered in the Northeast and on the West Coast. As in past years, the standouts represented both big and small states as well as those with high and low tax burdens. What’s more, the amount they spent to provide community supports for individuals with disabilities varied.
Mississippi was ranked last for the seventh straight year. Arkansas, Texas, Illinois and Virginia filled out the bottom five.
The report — which is produced annually — is largely based on data from 2011, the most recent available.
States are increasingly shifting to a focus on supports within the community, the analysis found. Currently, 38 states indicate that at least 80 percent of residents with developmental disabilities that they serve live in the community. These same states also devote at least 80 percent of their resources designated for this population toward community supports. That’s up from 14 states in 2007.
While some states outshined others the report authors caution that there’s work to do nationwide. Fewer than a third of those with developmental disabilities are employed competitively in the vast majority of states. And, waiting lists for residential services remain high, with 268,000 people in limbo compared to 138,000 in 2007, the report indicates.
Other options available to visitors of the interactive website includes the ability to:
- Compare state & national data
- View state scorecards to determine individual state performance
- Interact with the ranking map
- See highlights of 2013 report
- Advocate for areas needing improvement & promote key achievements
- Learn more about states at the forefront of managed care and employment issues
- Download full 2013 report and previous reports
Let us know in the comments how these results compare to what you've faced! How do you think this year's reports may look in comparison?