Tag Archives: Disability services

Behind the Scenes Tuesday- Down Syndrome in Arts & Media

Gail & Blair Williamson
Gail & Blair Williamson


When someone with Down syndrome wants to break into the acting biz, the best place to find an agent who “gets it” is  Kazarian/Measures/Ruskin & Associates (KMR) and Gail Williamson’s Down Syndrome in Arts & Media (DSiAM).

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M is for Music Therapy – A to Z Blogging Challenge

M on Blogging from A to ZMusic therapy may not be as common as some of the others we’re used to (PT, OT, and Speech) but it can be just as helpful. Most of the information online seems to be geared toward children – as we often see – but we can also approach music therapy from a lifelong learner perspective.

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Responding To The Community – Born This Way at the 321 eConference

When Born This Way aired on the A&E Network, it prompted mixed emotions from the Down syndrome parent community.  Strong emotions. I pondered long and hard about why those emotions came to the surface, and how we could help bridge the gap between parents who loved the series for the awareness it provided and those who experienced a level of grief because of what they saw. The “Born This Way – Building Support Systems Track” is a result of that search.

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Wait Lists and Disability Rights as Civil Rights

“Waiting lists.”

Is your loved on one? Have you heard of them? Do you know what they are?

Nolo, a website that provides legal information, tells us where the term “waivers” comes from.

“Historically, Medicaid-eligible people who needed help with things like remembering to take their medications, preparing their meals, bathing, and doing their grocery shopping would have been institutionalized (placed in a nursing home or other long-term care setting) to receive these services. The Medicaid program would not pay for those kinds of services unless they were provided in a nursing home or other institution. The Social Security Act, as amended in 1981, allowed states to create Medicaid Home and Community-Based Services (HCBS) programs that would pay for home-based services for elderly or disabled individuals. States HCBS programs must be approved by the Centers for Medicare and Medicaid Services (CMS) in a process known as a 1915(c) waiver.”

Qualifying for a “waiver” is how people with disabilities receive long-term services and supports outside of an institutional setting.

According to Medicare.gov:

1915(c) Home & Community-Based Waivers

“The 1915(c) waivers are one of many options available to states to allow the provision of long term care services in home and community based settings under the Medicaid Program. …Standard services include but are not limited to: case management (i.e. supports and service coordination), homemaker, home health aide, personal care, adult day health services, habilitation (both day and residential), and respite care. “

I recently asked members of our private group to tell me their stories.  One mother said they’d been on the list for 12 years. Another mother told me that after being on the list for six years, they moved to another state.  A caseworker had informed her that she would have to die before her sons would get services. A mom in Tennessee says her son has been on the list, designated as being in “urgent need” for eight years already.

Tennessee wait list

Personally, we move around quite a bit, and we would have to re-apply and start from scratch every time we move because each state is different.

Nationwide, there are 268,000 people on waiting lists for home and community-based services. People on wait lists for Medicaid Waivers for Developmentally Disabled (MR/DD) programs, with an average wait time of almost 3 years. Some states have waiting lists in excess of ten years.

Links to individual state policies on Medicaidwaiver.org show the startling differences between the states.

Florida wait lists
California wait lists

2013 stats published by ADA-PARC2013 wait list information

Many parents aren’t aware of, or don’t understand the waiver process. If parents don’t apply until their children need the services covered by Medicaid waivers, they may be in for quite a wait.

Texas wait lists

A new bill was introduced into the Senate by Sen. Charles Schumer, D-N.Y. The Disability Integration Act was designed as civil rights legislation, making it illegal “for a state and insurance providers that pay for LTSS (Long-term services and supports) to fail to provide HCBS (Home and community based services) by using waiting lists, screening people out, capping services, paying workers too little for services, or the other excuses that have been used to keep people with disabilities from living in freedom.” – ADAPT.org

Many disability organizations have signed on as supporting the bill.  So far, none of our national organizations are on that list.

*Update – since the original posting of this blog, the National Down Syndrome Congress has signed on in support of this bill. 

We believe that the Down syndrome community should join the wider disability community in supporting this important civil rights legislation.

Call to action:

Read up on the bill and especially why someone might oppose it: ADAPT

Let our national organizations know that we support the bill: Change.org petition.

Contact your Senator and ask him/her to co-sponsor the bill: United States Senate – Contact your Senator

Follow ADAPT on Twitter for updates.

W – Work that Needs Doing

By: Stephanie Holland
Work on The Road We've SharedThose of us with adult children know that we, as a society, have come a long way in terms of advocacy and services for people with intellectual and developmental disabilities (ID/DD);  but we also know that we still have a long way to go before our children are fully accepted and understood.
Today we’ll look at what kinds of projects are on the table right now, and where we might want to go next.Our community has been celebrating a victory lately: the battle to get the federal ABLE bill passed took almost a decade.  Parents and advocates from the Ds community fought in the trenches with people from many other disability groups.  That kind of teamwork and dedication is necessary to accomplish the big tasks. The National Down Syndrome Society was among the leaders of that charge, and they have a well thought out plan for what comes next. During the 321 eConference, Ginny Sessions Siller, and Heather Sachs talked about the NDSS agenda for 2015.  The NDSS National Policy Center is heavily involved in passing and tracking the progress of ABLE bills at the state level.  Both the NDSS and the NDSC have a system where you can sign up for alerts when support is needed from the community. 

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