Buddhist Catholic Contemplative Evangelical General Christian Hindu Jewish Latter-day Saint Muslim New Visions Progressive Christian

Beliefs

Topics

Columnists

Resource Library

Research Tools

Video

Podcasts

Thought Readers

Faith In Media Tracker

Newsletters

Ad-Free & Subscriber Log-In Subscription Support

Follow Patheos

Muslimah Next Door

Home
Muslim
Why is Setting up a Village of Support so Difficult?

Why is Setting up a Village of Support so Difficult?

Last updated on: April 11, 2016 at 9:53 pm by Dilshad Ali

Why is Setting up a Village of Support so Difficult? 2016-04-11T21:53:34-04:00 Dilshad Ali

LOGO Patheos Explore the world's faith through different perspectives on religion and spirituality! Patheos has the views of the prevalent religions and spiritualities of the world.

D shaking hands with the governor of Virginia, Terry McAuliffe

Ali Family Autism Truths #11 – April 11, 2016

As we wrapped up our monthly meeting, we pulled out our calendars to schedule our meeting for the next month.

How about May 12? She asked me.

No, I said. That’s my birthday. I don’t want to be depressed on my birthday.

She laughed. Depressed?

No, I’m serious, I said. Just consider this for a minute. We’re inclined, as humans, to try and live positively. No matter what is hard or difficult for us or our children, I try to live with the belief that “I got this. I can handle this.” But once a month we meet and the point of these meetings is for me to lay out every single thing that is difficult. Every single thing that is so, so hard for D, and for the rest of us. The point of these meetings is for me to tell you why “I don’t have this.” And why “We are all having trouble handling this.” And that’s really hard to do. Every time we meet and I have to be really honest with you, the whole day is hard.

She looked at me, fully understanding in that moment what I meant.

Ok, forget May 12. How about May 9?

I had my monthly meeting today with D’s ID (intellectual disability) waiver case manager. We meet monthly to assess what is going on with D, all the difficulties and challenges he has gone through in the past month, and everything that we are struggling with. I broke down what waivers are in a previous post. So briefly:

[D] is on the wait list for this waiver, which would help get him more care giving support and a host of other things to help facilitate his living in his own home with his family.

D’s been on the wait list for several years, in an “urgent” position due to some of the major challenges he has. Others have languished on the wait list for much longer. It’s a complicated system for someone to get a waiver, with the waiting list being in the thousands. (Nearly 10,000 on the wait list for intellectual disability or developmental disability waivers in the state of Virginia, and only a handful of slots open up every year.)

So how does one get off the waiting list and get a waiver? The caseworkers and state employees who assess these things look at several things: the severity of the disability, the situation of the family (single parent? health of parent(s)? age of parent(s)?), the home environment, how important is the waiver to helping one live in the community versus being thrown in a group home or a hospital, as well as a bunch of other things.

One of the biggest rallying cries of autistics as well as their families and friends is that we need adequate supports in place to help those with autism live as independently and fully as possible. Especially as they age and get close to aging out of the school system, the question becomes – what next?

Medicaid waivers are one of the ways autistics and their families can apply for the support that will help them stay out of group homes and live with their families or in an independent (and supported) situation. But boy is it hard to get a waiver. Some are easier to obtain. But others, like the ID or DD (developmental disability) waiver, which offer a greater number of supports, are much harder with waiting lists that number in the thousands, depending on which state you live in.

And how about if your loved one gets into a crisis situation? In the state of Virginia, where we live, three years ago State Sen. Creigh Deeds was stabbed multiple times in the head and chest by his son Gus in an altercation. Gus, a 24-year-old who suffered from bi-polar disorder, took his own life with a rifle. This followed after Sen. Deeds had reached out to his local community service board, seeking an Emergency Custody Order to find his son a hospital bed.

When a bed wasn’t found in the legal six-hour time frame, Gus was released. Later he was dead. If Deeds, a state senator faced this abhorrent lack of help and support for his son in a crisis situation, what chance do we have – God forbid – if D ever has a crisis situation?

The truth is that not nearly enough attention is given to what kind of federal, state and local supports are available to those with autism and their families as they age into adulthood. Things are vastly different depending on which state you live in.

We want to do right by D. Whether that’s living with us with support as he gets older or seeking an independent living situation (with support) for him – whatever that may be, we are committed to his future. I want to say, I got this. D has this covered. But the truth is, it takes a village.

So why is that village so hard to come by sometimes?

Stay in touch! Like Muslimah Next Door on Facebook:

Muslimah Next Door

Autism Awareness Month 2016

Ali Family Autism Truths

Previous Post

April 10, 2016

Hard Truths that Demand to be Lived With

Next Post

April 12, 2016 Conversations with Son H - Where He Lays Down Truths

Browse Our Archives

Select a Category A Global Voice for Autism Autism Awareness Month 2016 Autism Awareness Month 2017 Autism Interlude Hajj and Eid ul Adha Jenin Autism Project Ramadan Three Questions Uncategorized WISE Global Conference

Select a Month November 2018 October 2018 August 2018 June 2018 May 2018 April 2018 March 2018 February 2018 January 2018 December 2017 November 2017 October 2017 September 2017 August 2017 July 2017 June 2017 May 2017 April 2017 March 2017 February 2017 January 2017 December 2016 November 2016 October 2016 September 2016 August 2016 July 2016 June 2016 May 2016 April 2016 March 2016 February 2016 January 2016 December 2015 November 2015 October 2015 September 2015 August 2015 July 2015 June 2015 May 2015 April 2015 March 2015 February 2015 January 2015 December 2014 November 2014 October 2014 September 2014 August 2014 July 2014 June 2014 May 2014 April 2014 March 2014 February 2014 January 2014 December 2013 November 2013 October 2013 September 2013 August 2013 July 2013 June 2013 May 2013 April 2013 March 2013 February 2013 January 2013 December 2012 November 2012 October 2012 September 2012 August 2012 July 2012 June 2012 May 2012 April 2012 March 2012 February 2012 January 2012 December 2011 November 2011 October 2011 September 2011

TAKE THE

Religious Wisdom Quiz

Who wasted his wealth and ended up feeding pigs?

Select your answer to see how you score.

The Sower The Good Samaritan The Pharisee The Prodigal Son