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Aug 14

Disabled Housing Problem

With medical advances people with chronic illness or disability are living longer lives. That means cost of keeping people with these conditions alive is skyrocketing and housing them is also a very complex issue.

Often this population of people are among the poorest. Being physically disadvantaged is one thing, but also being financially disadvantage creates a world of problems. High medical bills, medication costs, regular living expenses and low rates of disabled being gainfully employed makes them one of the most vulnerable populations.

It seems more thought is put into children with disabilities. Education and specialized pediatric clinics are very important part of these youngsters lives. Funding and trials have always been poured into children with health problems; while adults with the same problems are often less advocated for. Most children with health problems are taken care of by loving parents that give up everything to care for them. What happens when those same parents age and can no longer care for that same child? What happens if they are just not willing to be caregivers for the rest of their lives? These are the type of questions we don’t think about. Some parents or adult siblings can care for a disabled person in the home long term. Often with the help of family, caregivers, nurses in the home. When those grown children become too much what happens to these people that require specialized care? They will likely be sent to live in an assisted living community or a nursing home.

These places may in fact provide good health care, but they can also break the human spirit. The will to live can be strong, especially with young people, but when they are forced to live in homes they do not want to be in, and that are not geared towards their age it can be depressing. Imagine, being in your early twenties and knowing you may never get out or gain any kind of independence? It sounds much like prison. If the human spirit and will to live is broken, many additional health problems can develop. We all know of elderly people who are forced out of their homes into a care facility having a terrible time adjusting to a very different lifestyle.People of all ages want to feel like they have some type of control over their lives.

Our new president had high hopes of ending the Affordable Care Act and replacing it with the American Health Care Act, putting millions of people in jeopardy with Medicaid cuts that would no longer allow as much help in the home with nursing and day to day care. If you can’t go to the bathroom, bathe, eat, or sometimes even breathe without specialized care these people will need to be moved into facilities originally meant for the elderly.

We already do not have enough care facilities geared towards younger folks with complex medical problems. Often older folks, younger folks, the cognitively impaired, and the physically disabled are put into living situations all together. Sometimes even alcoholics and people not fit to be in society are mixed in with these very vulnerable citizens in the same facilities.

A growing number of the population needs ventilator support at least part time. These people if their family can’t care for them must be moved sometimes hours away to the few facilities that take vent patients. Making them even more isolated from everything and everyone they are familiar with. Again, giving them even less choice of where and how they want to live their lives. Persons who are susceptible to respiratory problems can be exposed to more germs therefore in more danger in these facilities.

The cost of a person receiving care at home is always going to cost less than institutional care. It will never be cheap either way, but nursing homes cost more. Often these people are on a type of Medicaid program paid for from the state and government. Waiver programs help provide skilled care at home. Programs are even available to pay family and friends for the care they are doing.

Care facilities cost depends on lots of factors. State to state the prices fluctuate. Alaska and California are two of the costliest nursing home states. The average price per year for a nursing home is $50,000. The average cost of assistant living is now over $42,000 a year and rising. For someone to stay in their home and be cared for varies greatly depending on the type of care. It still cost thousands of dollars a month for these people to live in home, but it’s usually substantially cheaper and people are often happier. Here are some number breakdowns from 2011. Many different options are available provided you have a family, good insurance, or some sort of endless wealth.

• The 2011 average cost of a private nursing home room was $235 a day/ $85,775 annually.
• The 2011 average cost of a semi-private nursing home room was $207 a day/ $75,555 annually.
• The 2011 average cost for a month in an assisted living facility was $3,270 a month/ $39,240 annually.
• The 2011 average cost for a home health aide was $20 hourly/$37,440 annually.
Source: Home Instead Senior Care

What would be the ideal housing situation be for people with disabilities needing care? Of course, more programs to keep people in their homes if possible. For young people transitioning to adulthood it would be great to have more apartment style facilities. Apartment style housing gives people privacy and the feeling of living normally, but help is still available 24 hours a day.

Places like assistant living houses should have residence with things in common. Disorders, disabilities, age, interest, and same cognitive abilities should be considered. I know if I had to live somewhere outside of my home, it would be great to have peers and housemates I could relate too.

Nursing homes need to also be geared towards the residence. Wings of just younger people with the same cognitive abilities and similar disabilities would be helpful. More attention needs to be paid to group outings that are age appropriate. Things need to be geared towards the residence and open to friends of the residence. It’s important for young people to be with their friends and peers. It’s how they mature and stay socially active. Activities in all situations need to be something this age group would be interested in and be able to physically participate it. More thought and funding needs to be put into their people’s overall health, and not just their physical needs.

The human spirit is hard to break, but it can be done. I lost a friend last Spring who also had Spina Bifida. She had many health problems that worsened over the years. She married someone also with severe Spina Bifida. Over the years they moved into assistant living facilities and nursing homes. Often, they could not live in the same facility, causing their marriage to have problems. Both had their bodies break down, they became tired of the endless cycle. The man she married would die from a wound problem. One year later my friend was told she needed to be on a ventilator to continue to breath. She would have had to move to a state funded facility that was hours away from her family. She chose not to go on a vent, and died one year to the day after her husband. It still makes me wonder if she could have lived in a home setting if she would of chose the vent? If she did would it have worked miracles for her as it has for me? We will never know, because like so many others she was not given many options.

When we are dealing with healthcare we forget these are people. It seems to be all about how cost effective they can handle each case. The industry of housing the disabled or elderly seems to be only about numbers. We need to start meeting the mental needs as well as the physical needs of people who cannot live at home. The human spirit should not be controlled by finances. I am blessed to be able to live in my own home, but so many are not. We need to think about their needs, wants, and desires.

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