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Where the Heart Is - Choosing a Group Home

Written by: Michael S. True, M.Ed

This article is copy protected and should only be reproduced by permission of the author. For information contact me at: mstrue1@hotmail.com .

Moving up in the world, that's what it's all about. Choosing a group-home can be a scary prospect to families and consumers alike. Where to live, who to trust, getting the support needed to grow towards independence, these are issues confronting parents and young disabled adults everywhere.

I have been privileged to open and assist in the operation of Intermediate Care Facilities, (ICF's), or group-homes in three different states. Each organization was unique but provided some common elements which are the core of the movement towards community integration. From my personal experiences, I know that some are better than others.

I now look back over twenty years of working within the field of providing services for persons with a wide variety of disabilities. I have met with parents, support teams and done individual counseling, recommending everything from occupational therapists to appropriate attire for the workplace. Perhaps, one of the hardest choices that any individual or family must make is how to pick a place to call home. Knowing what's available, what's close to schools, work, stores, how to select an appropriate residential setting can be very difficult for those not familiar with the territory.

Let me start out by saying that time invested before the "big move" is the key to making the best possible choices. I continue to encourage parents of young teens to be open to considering what the future will bring for their sons and daughters. I cannot stress enough how important it is to look into the future. Questions such as, " What will happen to my child when I am too old to care for them? What do we, (parents), do when they voice their readiness to 'leave the nest'?", call for consideration earlier rather than later.

The first step is to research the possibilities. If you are connected to a social service agency such as (State) Department of Health and Human Services, ask what is available now. Parent support groups and public school teachers and administrators can also be a good source of information.

Most residential programs are required by law to have associations with adult day activity centers, vocational training settings, or job placement services. If this is not the case, (some provide "day care" within the home), be wary. Regardless of handicapping condition, integration into the community has a significant impact on quality of life.

We, as a society, decided some fifty-odd years ago that spending a life inside an institutional setting was a poor substitute for the kind of life we enjoy outside such places. Today, a strong movement across this nation is to move both the elderly and those with disabilities who are currently living in nursing homes, out and back into the community. Why? The experience of being placed together with one hundred or so other persons, bedded, fed, "entertained", and "occupied", is just not the same as being home near friends and family. Regardless of how badly an administrator want to create a home-like environment, monetary constraints will only allow a few people to be hired to care for the many. Even disregarding the horror stories of the neglected and abused, close personal attention cannot be provided if the staff is focused on getting folks dressed, fed, medicated and so forth. This is important to remember even when considering a six-person group home!

So, here is my list of questions to ask and things to look for:

1) Do the staff seem focused on encouraging independence or are they "care takers"?

If you visit a home and the staff are doing everything for the clients living there, you can bet very little will happen in the way of personal growth. Choice-making is often a good indicator. Do the residents get to choose the clothes they want to wear? What they will be eating? What they will be doing during their leisure time? When they will be going to bed at night?

Even for those who are unable to verbally express their wants and desires, if there is not an individualized system, (i.e. allowing clients to touch or point to preferred items, pictures or photos used for choice-making, icons in communication books, electronic touch talkers, etc.) that are actually being used, not only are choices not being given but training in choice-making is not likely to be occurring.

2) Do the administrators and staff seem familiar with the special needs of their residents?

If a program does not include the availability of activities and materials that are easily accessed by residents, if special equipment is poorly maintained or non-existent, if you cannot easily talk to support specialists such as physical and occupational therapists, medical staff, speech clinicians, recreational therapists, program and behavioral specialists, again, beware!

Sadly, I have seen and heard of situations where parents were told by administrators that their home "specialists" would be in after placement was made to evaluate and make recommendations. Then, at the first Program Plan meeting, one month later, they are not present and a recommendation has been made that "no services are required at this time"!

Granted, in some homes this is not such a major issue. The residents are active, healthy, and appear content within the setting. But even if you understand that no services are likely to be available in that setting, consider finding out who is contracted to be the house physician, dentist, even barber or hair dresser. If you can, talk to these people personally about your knowledge of any special needs. This can go a long way in making you feel more secure about general care being provided.

3) Is the overall appearance of the home neat and clean?

How does it look? Homey or austere, with bare walls, torn bedspreads, and few personal items in bedrooms? How does it smell? Is the kitchen area well kept?

The approach to providing comfort and care can easily be assessed by how livable the home looks. Ask yourself, would you like to live here? Attention to such details by staff is a good indicator of how much personal regard they have for the people living there.

Also look at the overall condition of the home. Are there screens off of windows, walls with holes, handles missing from dressers or cabinets. This could indicate a lack of funds for repair or a disregard of how the house is going to be kept up.

4) By what means and how often do the residents get to go out into the community?

If transportation is unavailable or inadequate to allow for routine outings, this would suggest that few, if any, are occurring. If there are never enough staff to take residents into the community, this too, can be a problem. Ask questions about daily involvement in shopping trips, going out to restaurants, movie theaters, outside clubs and organizations. If these are not on activity schedules, once again, the reality is that they are probably not focused on this important aspect of community involvement in this particular home.

5)What is the staff's attitude towards the people for whom they are caring?

Although it seems obvious, it is a good idea to casually watch how the staff are talking to the other residents in the home. Are they using their proper names, pet names, demeaning tones? Do they use "baby talk" to speak with adults? Do they keep directions simple or do they chatter on about what is supposed to be happening? Do they treat each client with respect or do they have their favorites and ignore others? Are they ordering people around or are they asking them to do things? Again, would you feel comfortable living in this household?

6) Active Treatment - Legal Obligations: What is it and will this be happening?

To those on the "inside" of the system, Active Treatment is a well known and understood term. Any home which is funded, all, or in part, with Federal or State monies, must follow specific state and federal laws now on the books. With these laws, group homes are obligated to provide a service paid for by the taxpaying community. This includes providing a safe and healthy environment, and providing active treatment.

Active treatment simply put, is skill training. There should only be a couple of hours per day where "nothing" is happening. This down time should not all be happening at one period of the day, but should be scattered breaks. This should also be the same on weekends! For all practical purposes, there are new skills to be learned or old skills to be practiced throughout the day. Daily Living skills such as dressing, grooming, cooking, house keeping, and so on, social skills, leisure and recreational skills, motor skills or opportunities for exercise, communication skills, and community access are all common goal areas.

When Treatment Plans or Program Plans are developed, what are typical goals for other residents of the home? Is the talk between staff and residents positive and learning-oriented? Are the tasks being taught broken down into steps? Are clients watching things happen instead of actively helping in the daily routine? Very little learning occurs without hands-on participation. If this is not happening when you first visit the home, don't think you will be able to change things after the move-in date! This program focus takes a complete dedication from the administrative and direct-care staff to make it happen. Often new or inexperienced staff won't see any reason for this constant teaching, teaching, teaching. But unless this is ongoing, the movement towards a greater level of involvement, toward more true independence, is not happening.

This is just a brief overview of some of the critical things that need to be examined when considering a place of residence. Other considerations might be, in what kind of neighborhood is the home located. How many staff are employed at the home. How many staff are new? Do staff persons speak the same language? How long has the home been operated? Are the owners/operators living in the same or a nearby community?

Finally, form an alliance with the agency doing the referral and placement. Work with them to give adequate time for arranging the home tours and applying to the homes for placement. Remember, most group homes have a waiting list. Sometimes actual placement can take up to a year or more depending on availability and your preferences.