Sep 15, 2017

If you are new to the "disabled adult child" situation ... [Part I]

This is written for parents who have a severely disabled child who is no longer a child. If you are new to this country, or new to seeking government assistance for your disabled adult child (I'll shorthand it as DAC), this is a somewhat concise list of things you need to know about, things you need to do and be aware of. All this applies only if your DAC is a US citizen.

There are 2 absolutely critical items to be done as soon as possible:

  1.  you must apply on behalf of your DAC for Medicaid coverage; and
  2.  you must make a will that provides for a Special Needs Trust in case something happens to you.
Eligibility for Medicaid is a prerequisite for just about every government-based assistance in the state of NJ (as well as in many other states), including day programs, respite programs, transportation, long term living facilities, etc. Even if you DAC has a private medical insurance, you still need your DAC to get Medicaid.

Medicaid  

ssa.gov is the government's site for Social Security Administration, which oversees Social Security, Medicare, Medicaid and a bunch of other programs. It is huge website and can be very confusing. 
One especially confusing part is the distinction between SSA's Disability Benefits and SSA's SSI benefits. SSA's Disability Benefits only apply to a person who has worked a part of their life and at some point became disabled. If your DAC is disabled but has not worked at all in their life, you cannot apply for him under the SSA's Disability program. Instead, if they are over 18 and have under $2000 in total, you can apply for SSA's SSI benefits. Information on SSI benefits and application process for disabled adults/children is at https://www.ssa.gov/disabilityssi/ssi.html

If your DAC has never applied for SSI, you can fill the application online. Otherwise, you need to schedule an appointment in your local SSA office.  You can find your local office based on your zip code at https://secure.ssa.gov/ICON/main.jsp.  If you live in Mercer County, NJ, the local office is at 
Essentially, your application for SSI is also your application for Medicaid.

Will and Special Needs Trust


If your DAC becomes eligible for SSI/Medicaid, you want to make absolutely sure that he/she never loses that eligibility.  If they ever end up with more than $2000 in their name, they can lose this eligibility. So, you need to make a will that puts any money or other assets you leave behind in a Special Needs Trust (SNT). SNT can contain money to be used for their benefit but does not endanger their Medicaid eligibility. SNT is best set up by a lawyer that specializes in such trusts. (I'm not affiliated with them in any way, but in Central NJ, lots of people use Hinkle, Fingles, Prior & Fischer  http://hinkle1.com/

Jul 12, 2013

Powerful piece in NY Times about building a network for a disabled person

Building Networks for a ‘Good Life,’ Even After the Caregiver Is Gone
By David Bornstein
June 26, 2013
http://mobile.nytimes.com/blogs/opinionator/2013/06/26/in-networks-for-people-with-disabilities-a-good-life-is-the-goal/

This article mentions another powerful piece:

Paying for Finn: A special-needs child
By Jeff Howe
April 22, 2013

Jul 3, 2013

June 2013 new info from DDD

Both documents below are from DDD Supports Program page at http://www.state.nj.us/humanservices/ddd/programs/supportsprgm.html

Support Coordination Agencies as of 06/27/2013* -- PDF document with recently approved Support Coordinators; my copy of it is here

Support Coordination Agency Selection Form as of 6/11/2013 -- Word document for parents to fill out requesting a specific Support Coordinator; I made a PDF version here

May 23, 2013

5/23/13 webinar "New World Tour for Adults with Disabilities: Your Questions Answered!" from efnj.com


Some notes and quotes from NJ officials from this webinar

~ 2 programs: Supports Program SP  (when living with family) and CCW (when living not with family)
~ "We do not expect a waiting list for the Supports Program"
~ can get Supports Program while retaining your slot on CCW
~ both SP and CCW will have behavioral supports
~ lots of future flexibility and more money
~ 6/1 starting -- single service plan; single rate table for services (no matter which DDD programs you are with)
~ DDD will not be doing case management; instead you'll will have Support Coordinator  by some provider and DDD will be more for quality review
~ to find local providers, best resource is the director of your local office
~ talk to and tour those providers
~ DDD is vetting Support Coordination agencies; the list of these will be published in June; you'll be able to specify your preference for the Support Coordination agency, but no guarantee that you'll get your choice

~ DDD links that were in the webinar:
Supports Program (SP) page -- they are updating this page regularly
Person-Centered Planning Tool (PCPT)
Individualized Service Plan (ISP) -- because NJ is now "employment first" state, employment-related outcomes have to be in each year's ISP 

~ DDD has hired a firm to set up standard rates; kickoff for the study that the firm is doing was on May 9; rates study over next 5-6 months -- see rates page at www.state.nj.us/humanservices/ddd/providers/ratestudy.html

supported employment (aka job coaching)
~ individual supports -- occasional coaching
~ group supports -- for those needing more intense coaching, groups of a few people with a job coach

new programs to support "employment first"
~ career planing
~ pre-vocational training -- e.g. volunteering to learn skills, job clubs (peer-to-peer help), training (e.g. social skills, computer skills)

What will need to be approved at support coordination level vs on state level?
small stuff and things that are in the typical price range -- at support coordination level
if more than 25% of budget -- need state-level approval

Supports Program Provider Portal  (SPPP)
~ SPPP link http://www.state.nj.us/humanservices/ddd/programs/sppp.html
~ right now, they are only accepting applications for becoming "Support Coordination agencies"; applications for becoming a general provider will be accepted in July/Aug

DDD will be processing 2013 grads now; nothing to do right now for 2014 grads -- "don't call us, we will call you"  -- can just gather info and do provider visits

The video of the webinar is to be posted at familyresourcenetwork.org after the weekend.

I will update this post when the video is up.

The flurry of DDD updates -- April 2013


DDD's main site

has seen a flurry of changes this month, some of which have disappeared from this page and some which remain (at least as of 5/1/2013). There are probably other presentations floating around and the ones I've included here have a lot of overlap with each other. 

On 4/9 (and other dates) there was a webinar on "New Vision for Support Across the Life Course"



On 4/15 there was a webinar on “Initial Phase of Support Coordination for the DDD Supports Program.”


from DDD's page:
On Monday, April 15, 2013, the Division of Developmental Disabilities (Division) held a webinar for providers interested in providing support coordination entitled, “Initial Phase of Support Coordination for the DDD Supports Program.” The PowerPoint presentation for this webinar can be found below under Presentations: PowerPoints, YouTube. We have also created a document of questions that came up as a result of the webinar and the webinar can be found under Provider Information.

Webinar slides: Support Coordination:2013 Age-Outs and New Presenters 4-15-2013 at nj.gov
or my downloaded copy  

Webinar video: at DDD's YouTube playlist DDD Informational Forums

On 4/22 there was a webinar on “What 2013 Special Education Graduates Need to Know About the Adult Service System.”

from DDD's page (highlighting is mine):
The second webinar will be geared toward the 2013 Graduating class.  On Monday, April 22, 2013, there will be a webinar for 2013 Graduates entitled, “What 2013 Special Education Graduates Need to Know About the Adult Service System.” This special webinar is specifically for families of students with disabilities who are ending their special educational entitlement in June of 2013. The presentation will discuss entering the adult service system. Topics to be covered include: available services and supports post-graduation, accessing supports, eligibility requirements and care management.

Webinar slides: my downloaded copy   
Webinar video: vimeo.com/64652075

Apr 25, 2013

"DDD Today" flyer for 2013-04


"DDD Today" flyer for 2013-04 that contains info on some of the upcoming changes:
http://www.state.nj.us/humanservices/ddd/documents/ddd%20web%20current/News%20Center/DDDToday4.2012.pdf

Renewing NJ Transit reduced fare card for the disabled


When NJ Transit reduced fare card expires, new cards are supposed to be mailed to you automatically (this is the policy for a permanent disability), but here's what a fellow mom learned:

 - the new card is not issued automatically; you need to call about 2 weeks before expiration to request it
- their new phone number is 973-491-7112

Website:  http://www.njtransit.com/pdf/sf_tr_fo_reduced_passengers_RF_application.pdf