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Letters to the editor: Families SPEAK UP on the need for housing options for ALL persons with disabilities.

The wrong perspectives from conference

I applaud Beth Miller for her excellent coverage of the disability housing conference. Her title “Those with disability: Where should they live?” sums up the key points discussed at the conference, which showcased the Arc Village in Jacksonville, Florida, where over 100 people with cognitive disabilities will soon be able to find affordable housing. The conference highlighted the severe housing crisis for people with cognitive disabilities and that families want a range of choices, including options like the Arc Village.
It is thus most unfortunate that Daniese McMullin- Powell, Chair of the State Council for Persons with Disabilities and an audience member, described the conference as a “segregationist meeting,” and that safety concerns, key for any parent of a child with ID, were used “as a barrier to integration.” To equate the insistence on choice with segregation ignores the fact that villages like the Arc of Jacksonville are based on individual preference. According to McMullin-Powell’s logic, one would have to critique and possibly close nursing homes because they segregate older people.
Her insinuation that the conference audience was all “white, rich people,” who do not need to rely on Medicaid support is not only factually wrong, but insulting to all who were present. Such unfounded general claims, whether launched at parents or at the concept of choice in housing options, are unconstructive and do not help us address the housing crisis.

Monika Shafi
Newark

Society’s duty to care for most vulnerable

In “Those with disabilities: Where should they live?” (Sunday), Daniese McMullin-Powell detracts from the real issue of housing for the disabled with personal attacks against the voluntary participants of a conference assembled to find sensible solutions for special needs housing. I find her labeling of the attendees as white, rich, segregationists very offensive and counterproductive. Unfortunately, it epitomizes the public debate in our country today, where issues aren’t decided based on logic but by those with the shrillest voice.
I firmly support Desiree Kameka’s position – there is no perfect solution that fits every situation. My parent’s greatest concern in their golden years was the disposition of my brother with Down syndrome. Fortunately my siblings and I have been able to keep him in our households with shared responsibilities. Not every family is able to do that.
I constantly see aging parents struggling to care for their special needs children. It’s crucial to ease the worry of these parents through a diverse set of opportunities that fit their individual situations. As a society, don’t we have the obligation to shoulder the responsibility for caring for our most vulnerable when those who have borne this obligation can no longer do so?

Teesie Bonk
Hockessin

‘One size’ doesn’t have to fit all
As a parent who attended the recent Innovations in Residential Neighborhoods conference covered in the article “Families: Housing a matter of civil rights,” I was overwhelmed but excited to hear about the many innovative, inclusive, independent and affordable neighborhood options already established or being built around the country for people with a wide range of disabilities. It is unfortunate that none of these options are available in Delaware.
My daughter has a very rare brain malformation, is developmentally delayed and has behavior issues and intractable epilepsy. She is 21 years old and says that she wants to move away from her parents someday – just like her younger sister and her cousins have. But she hasn’t been able to find employment, and she requires constant support for her daily living activities.
As my daughter’s guardian, her safety is a priority. I constantly worry about her future.
I was thrilled to hear about the many housing options discussed during the conference. There is no “one-size-fits-all” housing solution for people in the disability community. All people should have the option to choose housing that ensures the least restrictive, safest and most individually appropriate setting.
I’m a member of Families Speaking Up, a group of people who actively advocate for people with intellectual and developmental disabilities (I/DD) – including those who can’t advocate on their own behalf. Join us at our monthly meetings to continue discussions on innovative housing and employment options for people with I/DD. Additional information can be found at www.familiesspeakingup.com.

Libby Cusack
Newark

Why can’t Delaware be forward thinking?
Delaware, where will those who have Down syndrome or autism or other intellectual disabilities live as their families age? Last week at a housing conference sponsored by Homes For Life Foundation, we learned that Jim Whitacker, executive director, the ARC of Jacksonville, Fla., has spearheaded an intentional community for 120 people, who sought this type of neighborhood, on 32 acres of prime Jacksonville real estate. Why did the community come together to do this $18 million project with an additional $7 million land donation from the state of Florida? The Coalition for Community Choice said, “There is an urgent need for the development of sustainable housing and individualized supports in advancing more person-centered options.”
This project was possible because the community listened and respected the desires of all of its members. This community includes not just the residents, but Florida legislators, community leaders, faith-based organizers, and advocates. They learned to leverage many things, like tax credits, grants, and a capital campaign. At the present time, the project is not dependent on Medicaid funds for monthly expenses.
Delaware, are we forward thinking? Or are we stuck in the old fears and models which only partially solve our current needs?

Carol Kenton
Wilmington

Conference was far from ‘segregationist’
I am the mother of Andrew, an adult with autism. Last Friday, I attended the Innovations in Residential Neighborhoods conference sponsored by the Homes for Life Foundation, of which I am a board member. The meeting’s focus was to be a data driven, factual look at the current housing crisis for persons with intellectual and developmental disabilities (IDD), their families and caregivers. Using an approach that grew out of concern that anecdotal stories and opinions have misdirected the course of this debate, the goal was for attendees to be presented data to clearly show the scope of the crisis and, in turn, to offer families a look at outside-the-box housing options starting up across the country. I left the meeting feeling exhilarated at the openness of all in attendance.
I was quickly discouraged when, in the next morning’s News Journal, I saw Daniese McMullin-Powell’s characterization of the conference as a “segregationist meeting” and the audience as all “white, rich people” who had other options. Since IDD affects without discrimination, the conference was offered at no cost. Registration did not require listing ethnicity, race or economic status, making this data unavailable even to those planning the conference. Therefore, from what “data” did Ms. McMullin-Powell derive her statement, and if the source was anecdotal, what was her intent in making it?

Pat Swanson
Wilmington

Housing choices for disabled are important
I attended the Innovations in Residential Neighborhoods event sponsored by Homes For Life Foundation. I found the session to be incredibly informative and was excited to learn of modern and innovative housing opportunities for folks with intellectual and developmental disabilities. As human beings, we tend to surround ourselves with people who are like us. Those of us without disabilities can choose to live in a golfing community with others who enjoy golf, or a gated community with others who enjoy the privacy and safety they provide (similar to the Town of Whitehall breaking ground in Middletown this month), or a 55-plus community with other residents who are also 55-plus. How wonderful that the same choices may also be available in the near future for folks in Delaware who have intellectual and developmental disabilities!

Kate Lynch
Middletown

We need a variety of views
I spent some time thinking about this article, “Those with disabilities, where will they live?” and the conference it was about. I also thought about the schism that is so apparent in our community (the disability community). I applaud the Homes for Life Foundation, Micki and Lanny Edelsohn, Daniese McMullin-Powell, and so many others who have worked tirelessly for our guys. We all need to understand that one size does not fit all, ever. Daniese is a hero to me for her efforts on behalf of our community, and so are Micki and Lanny.
Our family has made choices for our son Marc that some agree with, and some don’t. And that’s fine, because people need a variety of choices. I find Daniese’s comments about this conference, and the choices offered there, hurtful, and can see no good that can come of them. I try to stay out of the muck and mire, but this time I need to speak up. It’s not awful, nor going backward, to offer a myriad of choices. Just because I might not agree with someone else’s choice doesn’t mean it’s invalid.

Deborah Jastrebski
Newark

Whose life is it anyway?

As one of the many family members who attended the conference organized by the Homes for Life Foundation, I was relieved to see that other parents are also grappling for solutions to the ever present issue of appropriate housing and employment for their loved ones with a wide range of disabilities and needs.
While I was thrilled to learn about a number of innovative options and programs that might meet the requirements of my son with severe autism, intellectual disability, communication and behavior disorders, I was dismayed at Ms. McMullin-Powell’s rather flip comment as to where, how and on whose dime our adult children should live.
Maybe, before making such assertions, Ms. McMullin-Powell should recognize that, thanks to the Olmstead decision, she can live independently in her least restrictive environment, in accordance with her needs. A setting, which may look quite different from one where individuals like my son wish to live.
Again, according to Olmstead, neither she nor policymakers should have the right to determine what constitutes a person’s least restrictive environment.
That determination must be made based on the needs and wishes of the individual with a disability, along with those of his/her family, where appropriate.
I deeply hope that the larger Delaware disability community will find it in its heart to support the chosen lifestyle of all its members, regardless of disability, beliefs, color or economic status.

Marie-Anne Aghazadian

Permanent link to this article: http://www.familiesspeakingup.com/2014/11/10/letters-to-the-editor-families-continue-to-speak-up/

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