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CARENOTES | Past Carenotes | Let's Talk


Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 10/19/10

Hello and thanks for your time.

To make a long story short, my father passed away 4/1/2010, leaving my sister as the sole caregiver over our two intellectually disabled brothers. She had to leave her home, friends and job in Texas and move into our fatherís home in Louisiana to take care of them. It is a 24/7 job. They are completely unable to be left alone or to fend for themselves. They have been tested and, although they are over the age of 40, they have the aptitude of a 6 year old and as much understanding. They have a disability check coming in which is closely monitored by the state.  My sister has no money of her own.
Is there a way she can get some kind of government income for herself as a caregiver? I read about a program called "IHSS", but it seems to only be in California. I had a friend in Virginia who was paralyzed and her mother was paid to care for her, but I donít know any details. I would appreciate any information you could give me that would help my sister.
I am sure you have tons of stories every day, so thank you for being there for us.


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Name: Mary Leach
Location: CSS-Life Sharing Through Family Living
Date: 10/19/2010
Time: 10:15 AM


There is a Program in the state of Pennsylvania called IN HOME SUPPORTS SERVICES. Contact your local Mental Retardation or Developmentally Disabled Association to direct you to the correct program.

Name: Crystal
Location: Colorado
Date: 10/19/2010
Time: 07:53 AM


Most states have similar programs to IHSS, such as HCBS Home and Community Based services. The best bet would be to look online or call the state office. Another great resource would be checking with some of the agencies there that provide services to the developmentally disabled. They have a good handle on resources available and may also be able to provide quite a bit of relief to the caregiver.

Name: maggie
Location: iowa
Date: 10/19/2010
Time: 06:57 AM


There is absolutely no reason why your sister is obligated to continue to care for your brothers exactly as your father did. She will most likely regret having to give up her life, and will not have the skills necessary to cope with everything needed to allow your brothers to be the best that they can be. No one person possibly could. Your father was from the era that hid disabilities away. Those days are over. The USA is filled with wonderful residential facilities that have programs that would fill your needs as well as your brother's needs. Where are they located? Check with that State's disability council, Vocational Rehabilitation office, or any local Mental Health Office. They will be able to guide you where you need to go. Good luck to everyone. (The money will increase when they are settled in accordance with their needs. Social Security disability and Title 19 take care of this, usually.)

Name: Erin
Location: Wisconsin
Date: 10/19/2010
Time: 06:49 AM


In Wisconsin, there is a program in which individuals can be paid (via Medicaid) to care for a relative or friend. The person in need of care must be 1) An adult 2) Not the individual's spouse 3) Eligible for Medicaid 4) In need of personal care and/or assistance with home chores, as determined by an assessment (completed by an agency administering the program). Depending on how much care the assessment determines that the person needs, a caregiver could be paid for up to 40 hours per week. Check with the local human services or agency on aging to see if a similar program exists in Louisiana. There are likely other programs that could benefit your sister and brothers - energy assistance, food stamps, financial assistance for needy families and/or community support programs for people with developmental disabilities that could facilitate and fund day program or sheltered workshop activities for your brothers, respite care or in-home assistance with personal cares and chores.



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