The Financial Reality for Severely Disabled Adults

On April 25th, PBS aired an interview by Robert MacNeil on the topic of autism. To watch a video clip of the interview or read the transcript, copy and paste this URL :
http://www.pbs.org/newshour/bb/health/jan-june11/autism6wrapup_04-25.html

There were many posted responses to this interview by viewers/readers. The following response struck a nerve with me. This writer describes the true financial situation faced by an adult in this country whose disability is so severe that they have never been able to work. As she says, it is what becomes of our adult children when family are no longer around to help them that is the frightening thing to parents because the financial supports from social security are so small. I have posted her response here because it is very accurate and it is a SHAME.

"RE: The interviewee who said "Let me just give you one example. Dove, my son, is 18. So, now he gets supplemental Social Security income. So, for an autistic person, he gets $634 a month. He would get more, but since -- he would get a little bit more, but since he lives with us, they deduct his rent. ...And so, after I pay for Depends, which are not paid for by Medicaid or Medi-Cal, that is about $400 a month. So, that's really not enough to support a person. Or let alone a person who, in his case, needs help every minute of his life. It's just..."

Get with reality. The MAXIMUM Social Securirty Supplemental Income (SSI) for an individual is $674 a month. SSI is what disabled people get if they have not worked, or not worked enough quarters with a certain level of earnings and not paid into the system, or not worked in the 18 months before they becamse disabled.

That is exactly the same amount that those who have never worked get if they are disabled by mental illness such as schizophrenia or physical conditions (MS, cerebral palsy, head injuries, any kind of injury etc.)

SSI recipients are enrolled in Medicaid and will be in it for life. ANd that means they will have trouble accessing care - particularly specialists. This state stopped paying for eye exams, glasses or dental care. Basically the SSI recipient can have their teeth fall out and then can do without being able to read or see - can't afford eye exams or dentists on that $674 a month.

Our society has decided that those who did not work at all or did not work enough are only worthy to receive that maximum amount of $674 on which to live. And if they get any more money from any source, that amount decreases.

A quadriplegic in a wheelchair since birth or childhood or before they could work who also needs 24/7 help gets the same amount. A lovely and interestings man here in town was diagnosed with schizophrenia in his 3rd year of law school. All he gets is that $674 and out of that he has to pay his rent in a low-income complex, buy food, pay utilities, pay for transportation, clothing and personal care, eye cand dental care, and pay the Medicaid copays in this state. And oh yeah, he gets about $75 in food stamps based upon the formula for calculating benefits. And he is the last of his family. GOod luck on that amount of money.

This is NOT a lack of money for those disabled by autism. It is an endemic issue about the lack of money to allow the severely disabled to even be able to live inside, eat, have light and heat, get glasses and dental care and buy clothing.

70% of the disabled have incomes BELOW federal poverty level - no where near enough to pay the costs of their needs due to their disability. The disabled - disabled for ANY REASON - live in extreme poverty and the US society thinks that is good enough. It is not 'just' autistics."

I hope that this changes in my daughter's lifetime and this appalling situation should be the subject of political action. I look at my own parents who were able to work for 30 years before taking an early retirement, were able to accumulate assets,savings and qualify for a pension from their companies. They would live comfortably, even without social security benefits. Yet, they receive much more per month in social security benefits than their disabled granddaughter, and as a result they can pay for travel 4 months a year in their boat or RV, redecorate their home, and live like they are on vacation for the past 20 years. Isn't there something wrong with this equation that gives more to some who have little or no need for support, while so many others are left at "below poverty levels".

Be Aware and Wary

You or a family member is unable to live alone and unassisted, so you look at your alternatives. Read this story and think about the options.

Amid Abuse Concerns, New Group Home Safeguards Unveiled
By SHAUN HEASLEY
March 31, 2011
Weeks after a newspaper investigation uncovered widespread abuse at New York group homes for those with developmental disabilities, state officials are making changes, but advocates say they don’t go far enough.
Under the plans announced Wednesday by the state’s Office for People With Developmental Disabilities, new group home staffers will be required to have a high school diploma and will be subject to psychological and drug testing. Current staff will receive additional training emphasizing “individual respect, dignity and professional ethics,” state officials said.
In addition, the agency will establish a centralized team to oversee abuse and neglect allegations and create a review panel to ensure that disciplinary steps are consistent.
“The protection and quality of care for the developmentally disabled is our highest priority,” said Courtney Burke, acting commissioner of the state disability agency. “The actions we announce today are the critical first steps on the road to improving the protection and quality of care for those we serve.”
The developments come after a New York Times investigation published earlier this month revealed a group home system plagued with cases of abuse rarely brought to the attention of law enforcement. In 2009 alone, The Times identified 13,000 abuse allegations among group home staffers. Police were involved in less than 5 percent of the cases.
Advocates for people with developmental disabilities, however, say the new measures are completely insufficient, pointing out that the state is not taking steps to remove group home workers with a history of abuse.
“To create yet more management teams and bureaucracy will never stop these systemic problems,” said Michael Carey, a disability advocate whose son died in 2007 while in state care.
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Program to Support Families and Educators

I came across a website for a program today that could prove useful to families who want help teaching their child new skills at home. It might be useful to educators who work with students on the autism spectrum or who have other developmental disabilities.
Visit this website: http://www.rethinkautism.com/default.aspx

To quote the article about Rethink Autism


"April is Autism Awareness Month. As part of its commitment to the autism community, educational technology company Rethink Autism is helping to educate parents through a new video series on their home page, "Every Day Counts, Everyone Can Help."
Developed by Rethink Autism's clinical team and hosted by Rethink Autism's Director of Research and Training, Dr. Hannah Hoch, the series provides an overview of autism, video examples of early warning signs, and research-based teaching strategies that they can start using immediately.
For parents and educators, Rethink Autism is also extending their one-week free trial to last for the entire month of April. After filling out a brief assessment, parents can gain access to individualized video-based exercises, printable lesson plans, and a complete series of ABA training videos"