re: question about older kids with down syndrome

[Guest guest]

There are a number of organizations that provide for adult living for

those with down syndrome and similar issues. Camp Hill is an

organization which runs a number. There is also Pathfinder Village in

Edmeston, NY.

We are seeing a growing number of living options for adults with down

syndrome and many don't at all resemble the " group homes " that we saw

established after Willowbrook. Those were focused on 27x7 complete care

with very little individual choice. When the van went do Denny's for

dinner, you went with them. The population however was much different

since most of those initially put into group homes were moved out of

institiutions where they had little chance to develop.

Today's group homes are quite varied, but they usually are " where the

clients live " and not where they are part of a mini-insittution. The

amount of care and supervision is way down since we much of our

population is much more able.

About 18 months ago I had the chance to see a number of the kids I knew

as teens and to listen to them tell about how they lived. It was a

real delight.

Two of the group had their own place, one a house near the parents and

the other an apartment a ways away from the parents. One of those two

was my daughter. Both had some help in managing their independence.

One lived with two other good friends (similar levels of disability) and

a live-in house supervisor. The guys did all the cooking and the house

supervisor mostly supervised and supported. Each had day activities of

their own.

Others were in group homes, but they happily told me about how they

lived and who their friends were. In a number of cases, best friends

were the same as a decade earlier.

Interestingly, all had moved out from the home they were raised in and

were taking on life without daily dependence on their parents.

The NIMBY issue is an old one. It is basically a non-issue today. In

group home days, it was frequently brought to court and almost always

the group home won.

If a group is living " sort-of like a family " , they can live anywhere.

If significant support comes from the state, there may be licensing

requirements and rules which include handicapped accomodation, extra

safety, etc.

I know of cases where parents have successfully set up group homes and

put the initial grouping into them and then handed them over to an

agency such as the ARC for management and support by the state. In NY,

this used to be against the rules, but the state eventually recognized

that this really created better environments and saved the taxpayers

lots of money.

It is hard to predict what our kids will be like as adults. My views

have changed immensely since Jan graduated from High School. Some

dreams of regular jobs have gone away, but some of that is growth of my

understanding of Jan and her needs and preferences. What I have is a

young woman determined to live her own life as independently as she can.

Your child .. soon adult will be different and your solutions will be

different than those our family has chosen.

Good luck! Taking leadership get what is needed is the right way to

go. Don't expect that it will come easily, however..

Rick ... dad to 34 year old Jan