As reported in Newsday on March 20, 2011, the Henley family continues to struggle financially as they provide loving care to Mike at home.
Unfortunately, navigating through the broken long term health care system is an overwhelming burden placed on the family. For today, the Henley's problem is that Mike is on both hospice and Medicaid home care for additional services necessary to properly take care of him at home. But Medicaid only lets the family keep about $1,100 of Mike's income to pay for his care while the excess amount has to be spent down on for his care. Mike’s wife, Karen not only takes care of Mike but works full time and she has two children to take care of. This is a travesty but there are no hardship rules for Karen.
One step that can be taken is for Mike's excess income to be paid into the NYSARC Pooled Income Trust so that money can be used for Mike's living expenses instead of being spent down. Unfortunately, you have to have the right Durable Power of Attorney to establish this special account with NYSARC. Now, the Henley's are facing commencing a guardianship proceeding. To compound the problem, there is a now an outstanding bill with the home care agency. Thank goodness for the Alzheimer's Association Long Island Chapter (Mary Ann Ragona, Executive Director) who have stepped in to help Mike and his family.
I was privileged to have Karen and her two children, Courtney and Brandon on my TV show, Family Comes First. To get to know the Henley Family more personally, you can go to:http://www.familycomesfirst.tv/families/2010-season