“What will happen when I’m gone?” Asks Parents of Adults with Developmental Disabilities

Offering parents peace of mind

This is a critical question for parents of adults with developmental disabilities, especially those who have been not only the parent, but the caretaker of their child. What will happen to the adult child when they are no longer present to oversee their care?

Once aging family members can no longer care for them, and they age-out of the system, they are at the mercy of others who may not show the same level of interest in progress as a family caregiver, and they may not have the same resources available for their daily needs.

According to a recent news article:

More than 306,000 people in New York State have developmental disabilities, including those with Down syndrome, brain injuries or on the autism spectrum. Almost two of every three of them – 195,388 – live at home with other family members as caregivers.

Of those living at home, 49,673 have caregivers who are 60 or older.

Solutions are not always straightforward, and policy changes are in position with new regulations that may, or may not, hold answers. Opengate’s CEO, Brian Hulten, has been addressing these policy changes in our newsletters to keep our clients, employees and parents informed of the details.  Everyone is invited to read our newsletters which are published online, or subscribe for a copy to be delivered by US mail. 

“We must continue to advocate on our consumers’ behalf that these changes remain rational and just and are not simply applied across the board.” -CEO, Brian Hulten

Currently, state plans call for funding of 530 new group home beds during this fiscal year and 500 more in 2016 and 2017. Unfortunately, this is not enough to fill the demand already on the waiting list, and doesn’t account for more housing which will be required in the future.

It also calls for mainstreaming many adults with disabilities into independent living and competing in the regular job market. Many parents feel this may be detrimental in the long run if individuals and their specific disabilities aren’t taken into account.

Parents are anxious and concerned that there won’t be adequate solutions for those whose disabilities may prevent them from working competitively, that they may not be able to independently find suitable housing or resources and be left in substandard conditions.

At Opengate, we take these concerns seriously. Facing these new challenges together with parents we hope to make seamless transitions as new regulations come into being.

We are fortunate to be founded and supported by a group of parents who are passionate about advocating for their children. We are committed to being leaders in the field and to offer the best care possible. Parents place their adult children’s wellbeing in our hands, and they deserve to have peace of mind that their child will be taken care of in a manner which respects them, even after they are gone. 

Like all non-profits, Opengate faces the same difficulties with future funding. As year end giving is quickly upon us we hope readers will consider giving generously to our agency.

Each month Opengate plans improvements, additions, or modifications to our infrastructure as well as purchases items for our individuals’ use, such as computers, greenhouse tools, etc.

Your donations make our work possible.

There are several ways to support the programs and resources we provide through donations or legacy giving. Please refer to our Support page or take advantage of secure online giving by clicking the Donate Now button at the top right of this page.

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One comment on ““What will happen when I’m gone?” Asks Parents of Adults with Developmental Disabilities
  1. donnargore says:

    This is so close to my heart and such a vital issue for all of those who work with the disabled. It’s the big thing that the general public doesn’t know, never thinks about. But families live with it every day, weighing on their minds, constantly! We do not need to add to the factions of our “disposable society- the elderly, homeless, the poor, the missing, intimate partner violence, those with addictions etc. We cannot treat our most vulnerable as if they don’t matter! No one is “yesterday’s trash” .Despite lack of financial resources, we must build coalitions and find options with dignity. Ladyjustice

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