Over the last 35 years the majority of children born with intellectual/developmental disabilities (Autism, Down syndrome, Fragile X syndrome, Traumatic Brain Injury, etc.) have been raised at home (not institutionalized), attended public schools, and participated in family life. These people are living longer lives because of good medical care. Most of these people are living at home with their families during their adult lives. Their parents are aging, tiring, and dying. Other family members may not want to care for these people for a variety of reasons.
Through no fault of their own they live with these disabilities.
How can our communities create more residential options to help these people continue to thrive?
If you are doing something to address this, what are you doing?
I’m paying taxes, which I’m told are high to take care of precisely these social issues. I also voluntarily donate money to an charity that takes care of these issues.
Everybody already takes action on this and every other social issue by paying taxes. We pay these taxes on the expressly stated assumption that government and public service are better able to decide appropriate funding to these issues than the individuals who earn the money. Thus every citizen is already taking action in the most effective way possible.
I would need to know what the reasons are, and if they are sufficient to make the disabled person a burden on society instead of on his or her family. Also how severe the disability is, and whether the person can live semi-independently with some support as my nephew does, needs institutionalization, or a variety of options in between.
I’ve read a little about this. It appears that this is another problem that is worse for people in the “middle”. The people who are profoundly/severely handicapped have the highest priority for government programs. The people who are mildly handicapped can be supported by family without too much strain, and they can also obtain the services of organizations, like Goodwill.
But the people who are in the middle–who cannot take care of themselves but don’t meet all the criteria for program eligibility–they and their families struggle. Here’s an example of a family that has first-hand experience with the excluded middle:
What’s the solution for this family? Well, some commenters (and lurkers, no doubt) think it’s a shame that the parents would rather both work than have one of them stay home and take care of their son. To these people, they should be responsible for him–not the state. And as harsh as this sounds, it’s hard for me to formulate a good argument against it, other than to ask what’s the benefit to society to allow this family to become a poor and minimally contributing household? And of course, what about the single parents who have a child like Bradley. They have no choice but to work. If they can’t afford nursing care, what are they to do?
And it’s fine to expect volunteers to step in…until those volunteers don’t show up and you’re already late for work. Or those volunteers are irresponsible or criminal or incompetent. Caring for the disabled is hard work. Why should we expect people to do it solely out of the goodness of their hearts?
Maybe I’m not familiar enough with the issue but it’s practically like having a child that you either have to stay at home or pay someone to stay at home to take care of him. That’s a problem for many families that don’t have a person that is already not working to provide childcare.
For disabled children with medical needs (of which, autism qualifies), it’s actually far more complex. You can’t just get a babysitter or place them in a normal child care facility. You are required in most places to have someone with certain qualifications care for them.
So instead of paying $150 or so a week on child care for each child, you are paying $400 or so a week for each child.
ETA: Costs are local to myself. I am unsure how much they would vary nationwide.
The difference is that for a normal child that is only needed for a few years. In this case the child never grows up to independence. You’re talking about someone who needs to be supervised to the same extent of a toddler FOR LIFE. For decades.
Oh, and they’re also adult sized, adult strong, and have adult urges.
Childcare is burdensome to many people. There are plenty of families who struggle with it…who end up sacrificing income (e.g., mother stays home) because the other options are too expensive. At least it’s temporary though. Once the children are school age, parents can return to at least part-time work.
But it’s very different when you’re talking about caring for an adult. You can get the 15-year-old neighbor kid to watch your three year old for a few hours. Would you trust your her to watch your 30-year-old, 300-lb son with a mental age of a three year old? You might be able to get elderly retired parents to watch a toddler while you work. But it will be special grandparents who will forgo an easy-going retirement by caring for their adult disabled grandchildren day after day. Changing diapers never gets fun.
Medicaid/care covers the cost of their medically necessary care and that’s all, in most cases. They need to be completely dependent and in no way semi-dependent for that care to be extended to an in-home care.
A problem I’ve seen is the gap between lay people’s assessment and medical assessment. To the average passerby, you have “disabled” “semi-functional” and “normal.” So if you fall into the “Semi-functional” category, well, you don’t need much in the way of service.
Medicine, on the other hand, categorizes each impairment. So, as in the provided article in the thread, you can pull on and off your pants, you are considered “semi-autonomous” which I’ve seen people equate with “early teenager.” When, medically, it means that you can dress yourself, and/or mostly comb your hair, and/or brush your teeth. Spelling these out, this time period is actually closer to 3-4 in a “normal” child. It makes it seem like you are “disabled” and not “Semi-functional” if you are 18 years old.
I understand the disparity in thought (and attempting some sort of fiscal restraint), but it does cause hardship to people that need to raise their disabled children.
Further difficulties arise as they reach adulthood. Many of the services outside of medicaid/care are withdrawn, such as support to help get a specialized vehicle, or financing for in-home medical equipment.
No, this isn’t true. They need to be homebound, and they must have a skilled need. Homebound means there has to be a legitimate medical reason why they can’t go to a hospital, clinic or other outpatient setting for their care. It’s usually described as “requires a considerable taxing effort to leave the home.” It doesn’t mean they can’t leave ever, it means that it’s considerably more difficult for them to do so than it is for most of us. They can be independent within their home, but say they’re in a wheelchair and have stairs to the exit and there’s no way to change that, they have to do dialysis at home every day, or they’re unable to safely leave home unsupervised due to cognitive decline or deficit. Those are legitimate reasons why a person may qualify for home health services but not be totally dependent. Lack of properly determining and documenting homebound status gets many home health claims returned by Medicare without payout. This is a great little professional blog entry discussing the difficulties in documenting homebound status.
Then there’s the matter of Need. For me to see them as an RN, they must have a Skilled Nursing Need. There must be something that they need done that I had to go to school to learn how to do and can’t teach a family member to do. This, too, is an area where a lot of claims are rejected. You’d be surprised what they expect a family member to learn - giving IVs, for example. Wound care of gross deep wounds that need packing. Tube feedings and managing ventilators and other complicated medical equipment. I can get a few visits for teaching this stuff, but I can’t visit indefinitely. Since most families of the patients we’re talking about usually know more about living with someone with special needs than I do, it’s hard to find anything much to teach them long term. These kids are young and healthy and don’t usually have ongoing medical interventions that only a nurse can do.
What most of them have is ongoing needs that could be best met by a Home Health Aide or a Certified Nursing Assistant. Those folks specialize in things like assisting people in bathing, dressing, eating, making phone calls, sometimes doing laundry and light housework. The way Medicare home health benefits are currently set up, I cannot staff you with am HHA/CNA unless you also require Skilled Nursing or Physical Therapy.
You could be completely bedridden and dependent on someone to wipe your ass and feed you, and if you didn’t have a Skilled Nursing or Physical Therapy need, I couldn’t get you an HHA/CNA. It’s stupid.
(I suspect it will change within the next 20 years, as the Baby Boomers start to realize it’s a problem for them. Quite often, you need someone to help Dad toilet and shower and dress…far more often than you need someone to do Skilled Nursing or Physical Therapy. Having those HHA’s doing in home care for custodial care would prevent a lot of hospitalizations and institutionalizations.)
So if you’re not getting any better and you’re not getting any worse and there’s no end in sight for the care you’ll need, you don’t qualify for home health care, even if you’re Homebound and even if you have Skilled Nursing Need. We’re temporary, intermittent help, not the long term solution.
These are called Activities of Daily Living (ADL) and Instrumental. Activities of Daily Living (IADL). If anyone is interested in seeing these assessment areas in great detail, with explanations for how we’re supposed to find the answers and score them, you can find that at this link: Pages 105-117 of the Oasis-C Best Practice Manual.
Bottom line: No, Medicare paid Home Health Care is not currently set up and funded to meet the needs of these patients.
What are your thoughts about the statement “we are more alike than we are different” regarding people with and without these cognitive disabilities? Would more housing options (safe, affordable with support) be available if communities focus on shared interests between people, or integration of the disabled into communities? If so, how would we encourage adults to find shared interests, build relationships and become neighbors? For reference: In every state in the U.S. there is lack of safe, affordable housing with support for people on Supplemental Security Income (SSI). Many of these people with cognitive disabilities receive SSI. “Priced Out in 2012” is a study released by the Consortium for Citizens with Disabilities (CCD) Housing Task Force and the Technical Assistance Collaborative (TAC). It states it is "virtually impossible for people with disabilities receiving SSI to obtain decent,safe, affordable, and accessible housing in the community without a permanent housing subsidy.”