Guest Author - Bonnie Sayers
The information I am sharing here is from my own personal experience within the State of California, Health and Welfare Agency, Department of Social Services, long term care worker under the IHSS program. Basically this means I am a home health care worker providing services to my son. I pay Union dues, have health insurance and worker's compensation.
Over the last several years I have referred dozens of families to this program. My knowledge extends only to the State of California, but any google search with IHSS and your State will guide you to the agencies in your State that represent the disabled, meaning children and elder home health care.
When you first hear about in home supportive services, from hereon referred to as IHSS, it appears that this is a program that pays a worker to come into your home to care for the elderly or disabled child. In California there is an agency entitled Protection and Advocacy, Inc. (PAI) that advocates on behalf of the disabled community, including school issues. I will list some relevant web sites at the bottom of this article to assist you further in obtaining services.
It is not widely known that a parent or family member can provide such services and receive payment for doing so. This is considered to be an alternative to nursing home care for the elderly, board and care facilities for the disabled. This way the disabled person can remain safely in their home receiving support from family members. Many parents are unable to work because of their child's specialized care or in the case of an elderly parent living in the home, another adult needs to be in the home to care for and watch over the elderly disabled member of the family.
IHSS has several components to the program. First it is for those who receive SSI, either a child or someone over the age of 65, who is disabled or blind. If you have not qualified for SSI due to income you can still apply for IHSS. One important fact to remember is that the IHSS income is not counted against SSI, so it does not affect your current or future payments.
IHSS has personal care services, protective supervision, household chores, accompaniment and paramedical services. There is a limit to the number of hours, depending on the severity of the impairment. The hours are determined by the task, except for protective supervision. A spouse or parent can be the provider for non-medical personal care, and, if prevented from working.
Household chores consist of changing bed linen, laundry, meal preparation, food shopping, errands and cleanup. Personal care would be non-medical assistance with respiration, bowel and bladder care, feeding, bathing, grooming, dressing, assistance with ambulation, help in and out of bed, assistance with medications and prosthesis care.
"Paramedical services are prescribed by a doctor for a person's health and require some training and judgment to perform. Common services are injections, colostomy irrigation, catheter insertion/care, suctioning, G and NG tube feeding, ventilator and oxygen care, fecal impaction, range of motion to improve function, wound/decubitous ulcer care and other services requiring sterile procedures." This data was taken from PAI publication form 527401.
Over a year ago it was recommended by several that my son should receive a G-tube. Luckily the Pediatrician did not agree with those and we went with Ensure Plus (over 350 calories a can). I did borrow a video that showed how to use a G-tube and when my son was in the Hospital a nurse introduced me to a few families whose children were tubal fed so I can see and learn, should the need arise.
Protective supervision takes longer to obtain since a form is sent to the Doctor's office and the time involved for this approval takes longer. You will receive up to two months retroactive pay when this becomes final. Depending on the county and/or State you reside in the form will go straight to the Doctor and seems very confidential to get information from IHSS. I had to keep contacting the IHSS office to find out the status, then there was the holiday, our worker changed and the nurse misplaced the form.
To move the process along I took my son to see the Doctor and they located the form and filled it out while I was there, so I got a copy for my records. Basically protective supervision means that the disabled person, either child or adult, has such severe mental impairments that they are a danger to themselves and need someone with them at all times. This is not the case for an elderly Alzheimer's patient hitting other family members, but themselves. For example my son bangs his head and pounds his chest. He also is unaware of danger and would walk into the street without realizing a car was coming.
The form asks whether the patient's behavior requires supervision (at all times) with a space for describing the dangerous behavior. There are four boxes to determine what the step would be without the in home services. They are need medical out of home care, become unemployed, need non-medical out of home care or be unable to remain safely in own home. The last response is what our Doctor and most I have heard from have checked. The form also has some questions about functional abilities, mental condition, capacity for self-care and prognosis.
I suggest the first step before making the call to apply for services is to make a list of all the things you do for the disabled person. A guideline also would be to compare what a normal able-bodied person of the same age can do and then jot those down. For my son children his age can use the toilet and get dressed without assistance. I made a note of how many diapers he goes through in a day as well as how much soymilk and bottles he consumes. Keep a journal for a few days to make sure you cover all details beforehand. My son has a form of PICA and has been known to eat dirt, sand and tree bark when not supervised outdoors, picks the plaster off the walls, plays near the knobs on the stove and turns on the microwave. He cannot be in the bathtub alone, needs help getting in and out of the tub, mouth stuffs and will run around if not contained while eating.
For a disabled child you will most likely have an IEP, this is an Individualized Education Plan, make a copy of this and have it ready for the intake with IHSS. Read through it and make note of any mention of the child being a danger to himself, and if he is assigned a personal aide or behavioral aide. Medication is to be available and noted for the IHSS intake as well.
To apply for IHSS call the toll-free number for your area and answer a few questions such as the social security number of the disabled person and their diagnosis. Next you will receive a letter within so many days with the date and time for the home intake visit. There is a time frame they have to do the intake and turn around. Once approved you will have another worker and on a yearly basis a re-evaluation. We had ours this summer and there is no need if nothing has changed for another form to be sent to the Doctor. There are lists to adhere to, timecards to fill out and inform the IHSS office if SSI has stopped or changed.
If the disabled person becomes hospitalized you need to report that immediately and will not be paid for the time spent in hospital. The notice of action will have guidelines for appeals, and PAI is an agency to contact for assistance in obtaining services. The form will have the breakdown of services you are paid for with the hours for each section. I get hours for feeding, dressing, oral hygiene, bathing, bladder care and the protective supervision. If my son becomes toilet trained in the future that would need to be documented and have the hours adjusted. For those that receive Food Stamps they may be discontinued when IHSS is approved.
Hopefully this will help you understand the IHSS program better and see if it pertains to any family members you may know and help in the decision for an elderly parent to move into the home or to stop working to care for a disabled child. I know many that are IHSS workers for their parents or spouses who have Alzheimer's and parents of children who have Autism. I have an adult sibling who is blind and two members of my family died from Alzheimer's so this is vital information.
Before considering placing a child in a residential home or facility or a parent into a nursing home look into the IHSS program and see if it is something your family can benefit from. There are pros and cons in all these decisions, but I personally feel that being there on a daily basis for the disabled family member instead of having a paid stranger to lean on, is the best choice.
The maximum hours for a non-severe person is 195 hours with 283 the maximum monthly hours for a severely disabled person. The assessment and fair hearing packet from PAI.
Rate of Pay for Counties
Regional Center System
Disability Rights in CA - IHSS
Protective Supervision - IHSS Index Page (this used to be Protection & Advocacy, changed name)
Teacher Questionnaire for SSI Eligibility
Health Products covered by Insurance
HealthCare Gift Cards
Educational Autism Tips for Families 71 page resourceful ebook for families entering the school system with a recent autism diagnosis. Find out what issues take place over the course of a school day and meet these challenges head on.