The Arc of North Carolina recently gave a presentation to the ECAC (Exceptional Children’s Assistance Center) on housing choices for your child with I/DD. Below are the slides.
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Request for parent stories
PACID is collecting parent stories so we can better inform state legislators and other policymakers about the realities of life with a disabled child or adult. We will anonymize your story if you indicate you want to keep it private. We would appreciate it, though, if you’d at least indicate what county you’re from so we can figure out who your representatives are. Try to keep your story short.
Indicate your age (and your spouse’s age, if you have one) as well as the age and type of disability your child has. Tell us the ages of any other children you might have, and whether you have any extended family able to step in if you die. Indicate what services you currently receive, and then those you lack (e.g., are you on the wait list, and if so, for how long). Feel free to add any additional challenges facing your family.
To respond, click on “leave a comment” (button to the left). Or email me your story directly to carol.ann.conway@gmail.com. You can also email me a picture if you like.
Carol Conway
NC’s DHHS monthly webinar for consumers (you)
Register for Every Side by Side
with DMH/DD/SUS Webinar at One Time
You can now register for all of the webinars at one time!
After registering, you will receive a meeting invitation that will allow you to add each meeting to your calendar with the join link.
The calendar invite will also include the join link.
Register here: https://www.zoomgov.com/meeting/register/vJIsduusrTsuEr3MP1SHj7smx4OysoTELcE#/registration
Closed-Captioning & American Sign Language (ASL) Interpreters will be provided at each month’s webinar.
Advocacy 101
NC Child is a nonprofit organization that educates parents of young children with I/DD. But it has materials of use to older parents too, such as their webinar on advocacy.
To see their archived webinars and what’s coming up, visit: https://ncchild.org/what-we-do/upcoming/
Scan down the page. The advocacy webinar they did on February 25, 2022, can be seen as slides or as a recording. It’s also available in Spanish.
Free 12/7/24 webinar on getting on the wait list for I/DD services
The ECAC (Exceptional Children’s Assistance Center) is partnering with the Autism Society of NC to explain to parents why they need to register ASAP for the Innovations Waiver, and why it can get you services even before you get the Waiver. Here is the link to register for the free Registry of Unmet Needs webinar ECAC is hosting on 12/7:
https://conta.cc/3suf6Fq
“Supported Living” option with the Innovations Waiver
For those who have the Innovations Waiver, “Supported Living” is an option that promotes independent living in the community. (Of course, paid housing isn’t included.) Below is a link to an online guidebook that’s been years in the making through parent input and agency support.
Supported Living (SL) comes in 3 levels, with 3 being the highest. Be aware that SL hasn’t taken off as well in NC as it has in some other states, especially for SL 2&3. The DSP shortage, and lack of provider back-up (despite being required) when DSPs call in sick, really messes things up. Also, there’s the issue of loneliness if the individual doesn’t have a robust schedule of social outings and activities. Too often, it’s still just DSPs and family members who serve as friends. These flaws are acknowledged and people are attempting to address them.
Thanks to NCCDD for backing the creation of this guide book.
I/DD housing needs in the Triangle and Triad regions
HOPE NC has just released (November 2023) its survey of self-advocates and caregivers on the subject of housing. It’s not designed to be perfectly representative but gives you a great idea about what folks want and where they currently live. No surprise–a huge proportion are still living in the family home.
https://static1.squarespace.com/static/64557c03d4b8a710251c91e1/t/654d019feec78f6b1ed54762/1699545512482/Final+UNC+TEACCH+Housing+Needs+Assess+Oct+2023+compressed.pdf
The Forsyth County Commissioners recently funded a study of I/DD housing needs. A landing page with the 4 studies that were created can be found at the following link: https://www.ptrc.org/ForsythIDD. The “Final Report” is still being reviewed by stakeholders and is more of a call to action than a study on building an inclusive housing community.
TCL as a possible model for subsidized housing for I/DD
Below is a recording of the PACID Zoom held on November 10th on the subject of housing. Specifically, Josh Walker, Olmstead Housing Director at DHHS, talks about the TCL program (Transitions to Community Living) which currently serves adults with SPMI (Serious and Persistent Mental Illness). TCL is being talked about as a model for I/DD subsidizing housing that would enable adults to live in the community.
The recording is 57 minutes long: https://drive.google.com/file/d/1jBKQIXi4I_bYiBsKVRuyPlAMYoOt1Dir/view?usp=sharing
TCL as a model for subsidized I/DD housing–and drawbacks
A lot of you missed a nice Zoom about a $38 million state-funded initiative that provides subsidized housing for people with SPMI (Serious and Persistent Mental Illness). It allows folks to leave things called “adult care homes”–which are not the same as I/DD group homes or ICFs–in order to live in their own apartment in the community. The speaker, Josh Walker, who is DHHS’ Olmstead Housing Director, recorded the session and we are trying to work out ways to make it accessible to you.
TCL is a little complex, but a fascinating feature is that, in addition to subsidized housing, each person gets a medical team of appropriate composition and size assigned to them…like a mini-hospital…to back up the transition.
HOWEVER, Josh also said that when the state offers to move a person out of their adult care home and into a well-subsidized apartment in the community, staff are sometimes met with refusal on the grounds that the person doesn’t want to lose contact with the friends they’ve developed in the adult care home. Moreover, TCL is finding that a number of the people that do accept the move are then unhappier due to their isolation. It’s perhaps a lesson to consider if I/DD residents are forced to leave due to ICFs being eliminated, or, even if ICFs somehow don’t shut down, if people are rapidly rotated through ICFs via “temporary placements”.
Living in the community is terrific for those with the ability to access to a rich array of social opportunities, as might be the case for those who work and/or drive. But simply parking people in isolated apartments is not a good method for de-institutionalization. I don’t think Dotty Foley–the original parent champion for Supported Living Levels 2 and 3–would mind me telling you that despite the many things she did to get her high-needs son out in the community he was still isolated in his apartment complex. DSPs and family members remained his only source of real friendship.
It is WRONG to prohibit the creation of housing developments that serve a high proportion of adults with I/DD (e.g., more than 20-25%). Threatening to remove Medicaid from residents living in a “concentrated” setting means only the wealthy can afford to forgo it and buy into private-pay developments. Yes, there is some wiggle room if the development can prove the residents have ready access to integrated settings, such as the ability to leave for work, but the burden of proof is on the development. This discourages developers.
A final key point here: While there is no fixed time limit, TCL was devised to provide subsidized housing temporarily until the person is stable enough to hold a job and earn a living wage. Some folks with mild I/DD might aspire to getting out of subsidized housing and off supports, but a large portion of adults with I/DD cannot. They will need permanent subsidized housing (and services) indefinitely. And as Josh said last night, the legislature hates to hear the word “indefinite”. We need to work at getting our representatives comfortable with this notion, because that’s the reality many of our families face.
How to contact your state representative
Our state representatives control almost every aspect of life for high-needs individuals with I/DD. It is the legislature–not the US Congress, not your LME/MCO, not your provider agency, not the county government, not state agencies–that ultimately decides how much gets invested in services and housing for the I/DD community.
While high-functioning “self-advocates” are getting training on how to approach their state representative, most parents are not. And in many cases parents are the ONLY voice their child will ever have. Parents are too exhausted by their daily struggles to advocate for their child’s future, and they don’t believe speaking up will make any difference. Even if they are interested, they don’t know how to frame their story. Too often they write in a long, rambling email that won’t get read. And they fail to copy the representative’s Legislative Assistant, who is the gate-keeper.
Step One: Look up your representatives’ names and email addresses at the ncleg.gov website. Look under both the House and Senate links. You can search by county if you don’t know their names.
Step Two: Put the representative’s Legislative Assistant email in the “cc” line. Their names and emails are always listed under the representative’s name.
Step Three: Focus. Edit yourself–yes, we all have complex lives. Write 3-5 sentences describing who you are, where you live, and the kernel of your story. Follow that with 3-4 short bullet points stating exactly what you need to fix things. Conclude with a line thanking them for listening and that you’re looking forward to hearing back from them.
Step Four: Review. Make sure it’s no longer than one printed page. Make sure you have been respectful, even if you don’t much like them.
Step Five: “BCC” yourself so you have a record of what you wrote and when.
Step Six: Send.
Realistically, individual legislators rarely have the power to force a change in your services, much less changes in the system, even if they are a member of the party in power. But your letter will generate awareness and add to the growing “chatter” in the halls of the legislature about big problems with the system designed to help I/DD families.
I/DD needs are routinely lumped together with all disability needs and thus get overlooked. People with mental health and substance abuse issues make the headlines but we don’t…so we’re invisible. In some other states, I/DD is pulled out of the giant disability pile and gets its own department, etc. So we have to work harder in North Carolina in order to be seen.
Please try!