News

A new funding opportunity from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL has been announced for an Rehabilitation Research and Training Center (RRTC) on community living and participation for people with intellectual and developmental disabilities.

The purpose of the RRTC program, which are funded through the Disability and Rehabilitation Research Projects and Centers Program, is to achieve the goals of, and improve the effectiveness of, services authorized under the Rehabilitation Act through well-designed research, training, technical assistance, and dissemination activities in important topic areas as specified by NIDILRR. These activities are designed to benefit rehabilitation service providers, individuals with disabilities, family members, and other stakeholders.

The purpose of this particular RRTC is to conduct research, training, and related activities to contribute to optimal community living and participation outcomes of people with intellectual and developmental disabilities. View more details and application directions.

Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on June 4, 2018.

To stay current on NIDILRR grant opportunities, please visit www.grants.gov and search: NIDILRR or 93.433.

Within ACL, NIDILRR works to generate new knowledge and promote its effective use to improve the abilities of individuals with disabilities to perform activities of their choice in the community; and to expand society's capacity to provide full opportunities and accommodations for people with disabilities. NIDILRR conducts its work through grants that support research and development.

Unless a problem presents itself, most people don’t think about their medical well-being on a regular basis.  Sure, people try to stay healthy by doing things such as eating right and exercising, but, unless something feels wrong with our bodies, we normally don’t think about what could go wrong or what we would want done if something catastrophic were to happen.  People with disabilities are no different.  Granted, we often have some extra baggage to deal with (cares, medications, accommodations, etc…), but most of the time, those things become second nature to us—we don’t even think about it

Some disabilities and health conditions are progressive which means the symptoms of the condition get worse as time passes and the effects are eventually terminal.  Fortunately, cerebral palsy isn’t considered to be progressive.  I’ve read in multiple articles that the average life expectancy for somebody who has cerebral palsy is around 70 years old.  Although, cerebral palsy itself doesn’t get worse, people often develop secondary conditions due to cp.  Research also points out that treatments used to help people who have cp sometimes can take a toll on the body eventually leading to premature death.

A few years ago, I wrote about how I was learning to navigate my way through the health care system.  In that entry, I shared a little bit about how I had started having some health issues.  In summer of 2012, I had a Baclofen pump surgically inserted which helps relax my muscles.  Three weeks after that surgery, I had major emergency gastrointestinal surgery.  Since then, I’ve had ongoing issues.  I had another surgery in 2014 and have had a few hospital stays since.  About three weeks ago, I had another emergency surgery and spent a few nights in the hospital.  I had yet another gastrointestinal issue.  Due to my past surgeries and the effects of cp, we found out that I’m unfortunately prone to having more of these types of issues and there really isn’t anything I can do to prevent it.

It’s often said that there isn’t enough focus on treating adults who have cerebral palsy.  There is quite a bit of information about treatments and research to help children with cp, but there’s not much out there for adults.  I’ve had many conversations with friends who also have cp, and many of them feel the same way—although we know cp isn’t progressive, we feel the effects of it impacting our lives more as we get older.  I haven’t done much research lately, but I haven’t seen anything recent on how cp effects the aging process.  It’d be interesting to see studies done on that. 

Like everybody else, each time I go in for surgery, I have to answer those dreaded questions.  What measures do you want taken to keep you alive?  Do you want to be on life support?  Questions such as those aren’t the easiest to answer especially when you’re headed into emergency surgery.  I understand why the questions need to be asked, but, regardless of the situation, they are never easy to answer.

Often times, people, especially those with disabilities and health conditions, are encouraged to have a Power of Attorney of Healthcare on record at the medical facilities they use.  The purpose of the medical POA is to give health care professionals guidance as to your wishes in case you’re ever in a medical condition where you’re incapable of making those decisions yourself.  You can designate two or three people who you would want to make decisions for you and on the form you can answer specific questions about your preferences for sustainability.  People should have the medical POA on record, but a licensed doctor must “activate” it if a situation arose.  Ashamedly, I admit, I have yet to get mine on record.  Every year, during one of my screenings for IRIS, I’m asked if I have one on record.  I’ve had the paperwork printed out for three or four years.  It’s just a matter of filling it out, getting signatures, and sending it to my medical providers.  What’s the hold up, you ask?  Well, aside from finding witnesses (they can’t be family members) to sign it, there’s a psychological aspect to it.  It’s obviously a sensitive issue to begin with, but, for me, it brings up another issue.  For most people my age, their next of kin or their designated person would be their significant other.  Thankfully, I have great family who have agreed to be my designated people, but there’s something about putting it on record that just makes me feel hurt.  I know I need to get it done though.

When I was young, I had no idea secondary health issues were common among people who have cp.  Dealing with health issues definitely isn’t fun, but it’s part of my life and something I’ve learned to deal with.  Having to make tough decisions about “what if” situations isn’t easy either, but I guess that’s called being an adult.  While, at times it isn’t easy to do, I try not to let my issues get in the way and live life to the fullest.  That’s all we can do, right?

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

A lawsuit is accusing the U.S. Department of Justice of acting illegally when it withdrew more than two-dozen guidance documents late last year, including several clarifying the ADA. The guidance documents describe the government’s interpretation of federal laws, providing information that can be important to state and local agencies, employers and recipients of federal funds. According  to the lawsuit, the guideline helped people with disabilities “move away from ‘sheltered workshops,’ where they are often paid much less than the minimum wage and are vulnerable to exploitation and abuse”.

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Advocates filed suit against Lyft, a ridesharing technology company, for violations of the Unruh Civil Rights Act and California Disabled Persons Act. The class-action suit claims that Lyft does not operate enough wheelchair accessible cars. Lyft has a service called Access designed for customers with disabilities. However, the lawsuit alleges that this service is a sham, and calls it an "inadequate substitute for actual accessible transportation."  When requesting a car in Access mode, Lyft only promises access for foldable wheelchairs and service animals. For people who need a ramp or motorized lift, the app sends a text message that links to a website listing phone numbers for other transit companies that may be able to provide accessible transportation.  The suit does not ask for money damages, but instead only for accessibility through Lyft.

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Twitter recently added "disability” to a list of protected groups on its abuse and harassment reporting page.  This is in response to user requests to allow reporting of abusive or harassing tweets targeting people with disabilities.   

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Recently, the National Council on Disability released a report that explains  that guardianship is commonly seen as a “benevolent measure” and imposed based upon assumptions about the capabilities of people with disabilities without appropriate reason.  Most states require courts to consider less restrictive alternatives before turning to guardianship, the National Council on Disability said, but that rarely happens. The report recommends that the federal government take several steps to help mitigate the overreliance on guardianship.

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The Centers for Medicare & Medicaid Services (CMS) is requesting public input about Dual Eligible Special Needs Plans.

Section 50311(b) of the recently passed Bipartisan Budget Act of 2018 (Public Law No. 115-123) creates a new Section 1859(f)(8) of the Social Security Act in order to increase integration of Dual Eligible Special Needs Plans (D-SNPs). In particular, the statute directs CMS to:

1. develop unified grievance and appeals processes for D-SNPs; and
2. establish new standards for integration of Medicare and Medicaid benefits for D-SNPs.

CMS’s Medicare-Medicaid Coordination Office is soliciting comments to help inform its next steps related to unified D-SNP grievance and appeals processes and new benefit-integration standards. This request for comments is directed to stakeholders working on addressing the needs of dual eligibles, individuals who are served by both Medicaid and Medicare.

Through April 12, 2018, CMS is inviting written stakeholder input on these provisions.

Please see the request for stakeholder input at: https://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/DSNPBBA2018.html, which provides additional background information and outlines topics and questions for which the Medicaid-Medicaid Coordination office especially would benefit from YOURinput.

Please submit comments, using the subject line “Comments on Section 50311,”to MMCOCapsmodel@cms.hhs.gov.

Thank you for providing comments.

Google  Maps has a new accessibility feature that makes it easier for people with disabilities to get around.  The "wheelchair route" feature is now available in certain large cities.  The company plans to work with transit agencies to expand this feature to other cities.  

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In 2016, Administration for Community Living's Administration on Aging contracted ICF International to conduct a participatory evaluation of the Title VI Grant Program, which provides home and community-based supportive services for older American Indian, Alaskan Native, and Native Hawaiian populations.

The evaluation seeks to answer the following questions:

- How do tribes/organizations operate their Title VI Programs?
-  What is the impact of Title VI programs on elders in the community? Are there differences nationally or by tribe/organization?
- Do Title VI programs that are sole-sourced funded have a different impact than programs that are funded through multiple sources?

The evaluation, still ongoing, has released its Evaluation of the ACL Title VI Programs: Year 1 Interim Report outlining the approach to and the design of the evaluation. In addition, the report provides information on the evaluation participants, timeline of the project, and initial findings.