What's New/News: Vol. 2, Issue 7
|Decisions about Extended Care
If a member of your family has a disability, depending on the type and severity of the disability, you may, at some point consider extended care or placement in a long-term care facility. This topic is difficult. Most families hope never to face the possibility but almost all families must eventually consider extended care. Let’s face facts. We have a population that is living a long time. Many times, the elderly become incapacitated and must be placed in a nursing home or similar facility. This type of decision can devastate a family. The decision can be even more difficult when a child is involved.
First, let’s discuss possibilities and how you might be able to improve the odds of avoiding placement, then we’ll discuss the decision process. If an individual is severely disabled, you need to get as much information as possible. What is the prognosis? What can therapy, school services, etc. hope to accomplish? Try to keep thinking in terms of providing the individual with as many daily living, independence skills as possible. Now is not the time to indulge your feelings of guilt or helplessness. Do what you can. Learn what you can do. Then follow through. Try to encourage the individual with a disability to do as much as he or she can do on his/her own. The more independent the individual is, the better the chances of placement in the most appropriate environment.
What is available? Living at home, supervised living, group homes, nursing homes, day care facilities and many more. You need to explore all of the possibilities. Even if you are forced to consider a nursing home, please choose carefully. Many places are very nice and provide excellent services. Other nursing home facilities are not as nice. Look for some place nearby where the family member can be visited frequently. Continued contact with the individual is essential to the well being of the person placed there.
Supervised living facilities and group homes are often excellent choices. Many elderly individuals are placed in nursing homes when other, much better options are available. Supervised living can be at the individual’s home or elsewhere. Group homes provide supervision to a small group of people who can and do function together like a family. Group activities are often planned. The people living in these situations have a social life and often live longer and fuller lives than they would in a nursing home.
The final question, and the most difficult, is whether to keep an individual with a disability in your own home or to place that person in some type of facility. It is a horrendous dilemma. My thought on the matter is that the decision is personal. It’s something with which a family must struggle. Whatever that family decides should be something they can live with. If the decision is made to place a person in a facility then that family should not have to apologize to the world for their decision.
Unfortunately, making the decision is not easy. The process can tear a family apart. Then, once the decision is made, living with that decision can be difficult. I have seen couples divorce over a unilateral decision to keep a family member at home. I have seen the other children in families literally destroyed by having to compete with a sibling, a parent or a grandparent who needed 24 hour undivided attention. On the other hand, I have seen couples divorce over the decision to place a child. So, no decision is right or wrong. And, no decision is easy.
The family needs to consider the burden of keeping an individual who is severely disabled at home. What will that decision do to the entire family? What will be the impact? Will the children suffer? Can a couple live without going out together except at times when respite care is available? Can a couple continue to have a satisfying life when one partner is at work and the other is at home trying to care for the individual with a disability, handling everyday situations that arise and being virtually alone day after day?
Then the family needs to decide if the individual with a disability will be better off at home or elsewhere. Family members can be suffocating. They can actually prevent an individual from doing his or her best by doing too much for that person. Everyone deserves the opportunity to grow up and leave home. Even individuals with serious physical or emotional problems can often succeed in the right setting. Elderly individuals very often thrive in group living environments where they develop friendships and have activities planned.
Finally, if the decision is placement in a nursing home, that placement may be the best for the individual who needs extensive care. The placement might also be best for the family who must see to the needs of all of the family members and cannot figure out how to balance the needs of the individual over the needs of the group. This decision can be, and sometimes is, the best overall decision.
If the decision is placement in any facility, the family must keep in touch. That individual left in a nursing home or even a group home needs to know that his or her family cares. It’s important. Find the time.
A parent contacted me by email this month. She sent me testing on her child who is in the fourth grade in a state other than Texas. Basically, the child is learning disabled. The school wants to hold the child back in the fourth grade while the mother has been asking for him to spend more hours receiving special education services. The mother wants additional modifications which have not yet been tried. The school wants to fail the child for having a learning disability.
You need an advocate. I live in South Texas so I would recommend that you contact a lawyer who practices special education law in your area. However, in Texas, we have a group called Advocacy, Inc. Do you have a local group that is similar? You might call around and check. Also, you need to talk to the State Education Agency and perhaps locate some assistance. You will have a difficult, but not impossible, time fighting the system alone.
If you must go to any meetings alone, please go in prepared. You will need to know the law. Ask the State Education Agency for a copy of the Individuals with Disabilities Education Act. It is cumbersome to read but you need to know the law. Also, ask for a copy of your rights. The school is required to give you one every year. Read through your rights.
Now, for the easy part, do NOT allow the school to hold your child back. He has not failed. The school has failed. Your child must be graded based upon his Individualized Education Plan (IEP). The school must modify for Kyle. If they try to fail him without offering him more time in special education or other modifications, then they could be looking at a lawsuit (or an administrative due process hearing). Of course, you would have to give them notice and give the school the opportunity to provide Kyle with a Free and Appropriate Public Education.
It is the school's job to modify for Kyle. If he cannot do the work as modified, the school must modify more. The only way that the school can fail a child receiving special education services is if the child simply is not trying at all and there is not a connection between the "not trying" and his disability. By that I mean that if a child is in a coma, you cannot fail him for not trying. I doubt that Kyle is not trying. He is most likely doing his best. He will continue to try until he becomes so frustrated that he "turns off". If the school will not modify, if the school will not give Kyle more time in special classes, he WILL become frustrated and give up. (Then the school will fail him and say the child failed when, in actuality, the school failed.)
Approaching this logically, let's discuss your son. Kyle is intelligent. He has difficulty learning. The school has the legal duty to modify and to keep trying different methods. The law does not care that the school lacks enough money to provide a Free and Appropriate Public Education. They must provide what Kyle needs to learn. Usually, the expense can be minimized by creativity. (Most educators are not that creative.) Be prepared to offer them ideas. Call a local teaching college or a college with a department of education and ask for suggestions. Your best bet will be to contact one that has a division of special education. Make an appointment with a professor who teaches special education and get some ideas.
After you have done your homework, request an ARD meeting (which in your state is probably called an IEP meeting or something else.) You have a right to demand a meeting. Do not let the school convince you that Kyle should be held back. Your child needs his self-esteem. Make suggestions. If they push the idea of failing your son, discuss Extended Year Services (EYS) or some other summer school reading and language program—paid for by the district. That type of program will prevent regression during the summer months.
Good luck. Contact me if you run into any roadblocks. Demand your rights. Stand firm. You are your son's best advocate.