That happens everywhere. Most people use Medicare and Medicaid, Medi-CAL (varies by state) to fund their nursing home stay. The state uses funds to pay for room and board from programs for the Aged and Disabled. They are allowed a small amount of money for incidentals from SSI or SSD for things like clothes, etc. Usually it is between $10-85 a month. The main reason for this is that the facilities are supposed to be all inclusive. So it covers medications, nursing, food, toiletries, attends, etc. Obviously, many places cut corners to save money. Depending on the level of care or acute illness, a patient/resident may switch back and forth from Medicare to Medicaid paying for the stay. When a person has retirement funds, typically those who do were teachers, police officers, fireman, etc with the demographics right now; the monthly payment goes to offset the entire monthly cost of the nursing home. In most cases a secondary payment provider, such as Medicaid covers the rest. But...that is with the elderly.
In a case like this, it is a violation of human rights (people were deinstitutionalized in the 1970s) to place a Developmentally Disabled (DD) person into a nursing home or to "warehouse" them, unless their medical acuity or medical care needs are far greater than their disability. So Lynn is NOT a match for a nursing home. I don’t think she was a violent, combative or sexually aggressive DD or head injury, so finding an ICF/MR or residential home for her would put her at the bottom of the huge, huge waiting lists. Placement is not really an option. The way the states view situations when they look at supportive services, such as day treatment, etc is the factor in caregiver support. Anyone who is of relation, mothers, fathers, sisters, etc, is considered in the amount of help they get. So what happens is, because of “family obligation” any or many of the services people qualify are cancelled out because the state thinks the family should do it. This is ok to an extent. However, many people, such as Lynn who used to get day treatment have had those services cut. So, they can’t get their therapy, the caregiver can’t hold a full time job, because the patient needs constant supervision and assistance to do the basic things, like dressing, grooming, eating, etc. Not to mention the whole safety aspects. So, then you have a parent who has to quit their job to stay home and try to live off of the persons meager SSDI. This leads to caregiver fatigue and burnout really fast. The thing is nothing in life is routine with a DD child or young adult. Even a trip to the dentist for a routnine cleaning requires total sedation. So, a parent can’t just run out on lunch break to take a child for a cleaning. They have to take days off of work. Then you look at how the person deals with pain from dental cleanings, surgeries, etc. You can’t rationalize with them, they do not understand, they act out on their pain. And the larger the DD person grows, the harder it is, because often they are just as strong as you are.
So, in order to save money, the state places families in a lose-lose situation. Yes, we can be idealists and say oh…it is their obligation, they shouldn’t be reimbursed or helped financially…but the reality is, how many of us could stay afloat financially and emotionally being destitute, with no help and no respite care for someone who has the mentality of a 2-3 year old, has the hormonal fluctuations of a teenager and is impulsive, has no sense of personal safety, boundaries and cannot complete the basic tasks for themselves year in and year out with no break. Forget taking a bath or using the toilet with the door clesed. Not only would this burn you out after many years, but from the financial standpoint, how many of us cannot survive on $1600 a month for a family of 2 or 3. Maybe, but, not when you include gas money to many appointments, special dietary needs, attends/diapers, etc, special locks for doors, learning materials, etc, etc. There is no free time to cut coupons, browse a store for deals, prepare low cost foods, because you have to constantly engage in 1 on 1 with the person for their safety. Personally, given Lynn was well cared for, didn’t appear abused, etc…I think the mom just snapped and couldn’t handle it anymore. But, she should get credit for the years she put in, the dwindling support services, etc. And maybe, the states can use this as a very good reason to stop budget cuts and restore services. I feel bad for both of them. I hope this case helps advocates for the disabled get a foothold is wrestling back services for people like Lynn and helps people like the mother get much needed respite to revitalize her own self. The best analogy I can think of is when a flight attendant on a plane is giving emergency instructions. They always say, if you are traveling with a child, someone who needs assistance (or someone acting like a child…lol) place your oxygen mask on first, and then assist the other person. Why? Because, if you pass out from lack of oxygen trying to save someone else, you both die. First rule make sure you are safe, then help others. Well…caring for a family member with DD or a brain injury essentially means, you don’t get to put the mask on yourself first. Period. Care giver fatigue, burn out, etc…resulting in the mom snapping. My two cents.