Kiralea in Australia has been writing about issues they are having getting funding to care for Jordan who experiences Autism. See http://jordanpowell.blogspot.com/2006/02/what-is-going-on-with-our-australian.html. I have been hearing from several in the United Kingdom that they are having difficulty getting their government to recognize the dual diagnosis of Down Syndrome and Autism so appropriate school and other programs are not available to the child.
Now it is happening to us AGAIN for the umpteenth time. In the United States a program called SSI (Supplemental Social Security Income) is available for disabled persons. Well somewhat available for disabled persons – it can be a struggle to demonstrate eligibility for some children and adults. It is not big bucks. The last time I knew it was about $500-600 a month.
I should clarify for those of you not in the U.S. that there is a difference in SSI and regular Social Security benefits. SSI is an entitlement based on disability not drawn on a claim that someone has paid into. Social Security benefits is based on a claim which some employee has paid into. For example, Billy Ray’s father was a state employee for 35 years so Social Security was withheld from his earnings.
Billy Ray has never received SSI because while my late husband was alive we had too much income. Then after his father’s death he drew as a survivor under Social Security. At 18 years old, he was declared disabled by the Social Security Administration. He still draws off the claim, which Raymond had paid into all those years, but it is now based on his own disability. He also gets Medicare (health coverage) through this claim including the new drug coverage. It is better than SSI monthly benefits but it is not nearly enough to support his needs which are not covered by other programs.
I will not go into detail about how the information was provided to us in the method most likely to upset me and therefore, Billy Ray, which it did. However, the state has now put Billy Ray on a list that means he should start paying a co-payment for his in-home supports which sounds like nearly 50% of his benefits. The reason for this is that he is not on SSI. The only reason he is not on SSI is because he draws on his father’s claim. Without that he would be SSI eligible.
The reality is that because of his special diets to try to keep his diabetes under control while dealing with the thyroid problems which are increasing his appetite and thirst, we spent more on groceries in the last month than the benefit from his Dad’s SS claim. In addition thereto we provide funds for his community activities including lunches out that he thrives on, his clothing needs which are extraordinary, diaper wipes, obsession about laundry that ruins machines, property damage, etc., etc.
Billy Ray is one to one care and supervision 24 hours a day 7 days a week. If he were placed in a facility in addition to the specialized type of facility it would be necessary to hire one on one staff round the clock. The figure of $20,000 per month has been thrown out regularly.
We do the visuals, create a schedule and environment that works for him and would be difficult for a facility with more than one resident to provide. Without it his behavior would be unmanageable. I closely supervise weekday support staff or provide direct care for him 24-7. Presently the budget for in-home supports during the weekdays is less than $5,000 per month.
If they jeopardize my ability to keep him at home, it would cost the state four or five times the amount they are presently paying to collect a few hundred dollar offset. In addition, because his behavior will be impacted by the difficulty of trying to create the customized environment that has taken us years to create and continual readjustment, he will require more medications with side effect risks and will be at risk of hurting someone else or being hurt.
Somehow that doesn’t seem good business sense even if you overlook the impact on Billy Ray.
Peggy Lou Morgan