Handicapped Housing Crisis

A practical and economic solution

Like most parents who have spent a decade or more caring for a profoundly handicapped child, my husband Jim and I approach our late fifties with trepidation and dread. Our son, Alex (diagnosed with acute infantile autism at age three, and suffering from epilepsy as well) is now nearly 24, and despite enormous strides in his self help skills and cognitive abilities it looks like Alex will still require a lifetime of support. Residential care, if you will. But where? And at what cost? This haunts all parents in our situation.

The sad fact is, NJ is shockingly unprepared for the tidal waves of handicapped people requiring services as they age out of the special needs school system each year and graduate into the real world -- a surprisingly cold real world. All the protection and services they recived in their youth vanishes in an instant. As parents scramble for often-denied, regularly delayed, and crushingl;y expensive adult services, the improvements made during the school years atrophy and sometime regress.

Services That Don't Service

The Division Of Developmental Disabilities is overwhelmed, underfunded, and badly disorganized. A typical case worker carries a 500 person load.Caseworkers are not required to meet their clients!!! We were told we could't even get on a housing list til we were at least 55(we're 53) and THEN there's a 20 year wait. That means New Jersey expects most of us to be caring for our handicapped adult kids until we ourselves are well into our 70s and beyond...unless perhaps theres an obliging offspring who has the time, patience, and financial resources to stay home full time caring for their sibling....assuming their prospective mates don't mind..

And by the way, none of this is tax deductable. Yes, your son or daughter gets Social Security, but it's a spit in the bucket compared to what you spend on them yourself...the very fact that one of you has to quit work and stay home part of full time to keep an eye on them and provide companionship means a tremendous loss of income. Yes, there are programs available, but they underfunded and complicated to get into. Most run to the early and mid afternoon. What do you do with the REST of the day??? Yes, Self Directed services {ie Real Life Choices}was created and funded to fill the need, but honestly, there is'nt enough money being funneled into that program, and getting them to agree on anything or give you the amount you need for your child is like pulling teeth. We ourselves chose a day program for our son through RLC but transportation was not provided...so I drove 3 hours a day 5 days a week for 8 months before we quit the program, unable any longer to keep up the routine. And day programs only last til 2 or 3 o clock or so.....then the consumer gets to go home and sit in front of a screen for the next ten hours. That's a life???

Well, we have an answer. Fort Hancock NJ

(Scroll down to see some amazing photos)

Nestled snugly at the north end of Sandy Hook, protected by wetlands and federally owned shore property, Fort Hancock, shut down in 1974, is comprised of a virtually intact miniature city with all the resources already created and available to house dozens if not hundreds of differently-abled individuals with dignity, caring, and purpose.

In addition the base's original designated use as an Historic Property could certainly be maintained and considerably enhanced. Frankly, in the 30 years since the property was decommisisioned and turned into an historic park nothing much seems to have happened, and it remains, for all intents and purposes, a meaningless ghost town.With the buildings renovated and the property improved through funding and human habitation a considerable amount of history can be saved and shared with a public that deserves the opportunity to learn role the fort played in defending Jersey's shores. Certainly tours could continue, a fully staffed museum could be created and maintained on the base (only one of many examples providing excellent opportunities for employment and social interaction among the citizens of the Retreat) We were amazed at the potential of this place and cannot figure out why this has not ocurred to anyone else. If there is a reason Fort Hancock could not be transformed into a gated private self-contained community Retreat for the disabled we would love to know it. Here are the details:

QUESTIONS

Who owns the property? It is owned by the Department of the Interior and is part of the Gateway National Recreation Area.

Where is it? Sandy Hook, New Jersey, at the northern tip of the Jersey shore. It's off GSP Exit 118, about 55 miles from NYC.

What was it? A military base dating back to Colonial days, although nothing except a beautiful light house exists from that time. Most of the dozens and dozens of sturdy brick buildings were constructed in the 1890's.They are for the most part empty and unused.

What purpose does it serve now? Decomissioned in 1974, Fort Hancock has been designated as an historic property although none of it's earlier buildings survived, no important battles were fought and no one is buried there. It's got some interesting things to see,(some cannon, battery works) but mostly it's just a pretty place to walk around. People birdwatch a lot.

What facilities does it offer? This is the incredible part. Everything! If you wanted to sit down and design the most wonderful place in the world where disabled people could live, work and play in convienience, dignity and privacy this is the place. Almost every resource needed has already been constructed, and needs only some repair and renovation.This includes-

Dozens and dozens of identical beautiful solid brick Victorian homes in a row- in need of some work, of course, and handicapped renovation, after 30 years of neglect-but essentially in good condition . Each home must easily accommodate at least 5 to 8 people. In addition there are dozens of other similar buildings on the property, all standing empty and lifeless.There is more than enough room to house-in positive luxury- dozens of disabled individuals with plenty of space for their relatives to stay when they come to visit, as well as adequate space for employees, caretakers round the clock, aids and college students who might be there to work, volunteer or research, not to mention housing for colleges that might want to rent an annex or two to hold classes and courses for grad students planning to go into the teaching and therapy fields as well as buildings housing office space and research facilities.In addition there is a -

-Postal Office

- Hospital

-Machine shop

-Commissary, PX.

-A Bakery. The Fort had it's own on-base bakery.....there's no reason why it still could'nt.The Retreat could provide it's own baked goods for it's own community, again, valuable employment opportunities abound.

-A Chapel provided a place for prayer and meditation and services.

-A Moviehouse (could be customized for wheelchair access) would provide the wonderful normal experiance for the handicapped community that we all take for granted......being able to go out to to the movies anytime we please with our friends, sit down and eat popcorn. In fact, there's even a stage for putting on plays.

- Stables housing mules once existed on base, so horseback riding could be available. Once again, good old fashioned normal decent fun and excercise could be offered to the Retreat's community in addition to providing employment. Perhaps it would even be a good place for retired horses to go instead of being destoyed.

-The Mess Hall would be a perfect community dining room for meals shared together and social /holiday occasions celebrated.

-A Firehouse

-A YMCA existed there........it features a Gymnasium, snack bar, and a library (definately a good place for a Computer Center)

in addtiion

-There's space for setting up classrooms as well as teaching vocational skills.....perhaps even stores where residents could produce local products or souvenirs (as well as do their own shopping.)

There are miles of beautiful nature walks and shore line nearby.

This could even be a wonderful facility to host disabled summer caps, and medical conventions.

Won't this be terribly expensive? I don't want to hear about budget gaps. This country sent 9 BILLION DOLLARS to Africa in 2006{See Washington Post, President Bush Triples Aid to Africa, April 2006} We're spending zillions on the space program. The military is spending 270 million dollars to change the uniforms of the soldiers from green brown to green grey...it had to cost 270 million dollars to do this???You know the list goes on and on. I woke up to a newscast the other day announcing the federal government giving the state of Conneticut a million dollar grant for "anti smoking initiatives." Are they kidding with this???

I have seen from my own experiance how money spews out of DDD like a firehose. Tell them to cut down about 15 of their bureacracies which do little more than hand out information that is out of date or completely redundent in the first place.{ Do we really need a Divison Of MultiCultural Health???} When my husband and I fought DDD for 5 months to get 5 hours of daily day care programming our application went past no fewer than 15 people to get approved...and not ONE of those people ever met my son or wanted to!!! YES!!! It's a regular custom of theirs to not even meet with the client!!! They claim they are too busy!!! and if they met with ONE client they would have to meet with all of them, and there are too many to do that for. How is that for efficiency??? ......and do you think there are people who could easily take advantage of this lousy system and abuse it??

.It's the government's responsibilty to aid families in finding places for their disabled family members and it seems to me a heck of a lot cheaper to start with something already built. (You have heard that there is a 150% increase in autism diagnoses?? Where do you think these children are going to wind up?) With so much DDD funding going for individual services (transportation alone is costly and very wasteful) pooling these same resouces for a single project would yield immediate savings. We're confident that hundreds of parenst would jump at this solution if given the opportunity. Further savings can be had when you consider how many parents here reading this would be willing to donate their services. You think there isnt a guy in construction with an autistic kid out there who Would'nt contribute to helping to fix up these buildings? or donate computers? or fix a swimming pool?? or refurbish a bakery so it's working again? Landscapers? Electricians? Carpenters? Masons? Plumbers? Surveyors? Lawyers? Here's an idea...offer a free house rental to a retired pizza parlour guy in return for him running the Retreats "pizza parlour" and using it as a training ground for clients who wish to learn those skills.Some of them, including my son, just might develope to the point where they could work in a real pizza parlour in the nearby beach resorts. I would leave any Federal funding opportunities to those who know the ins and outs, but I'm sure that this pilot project could get national attention as an innovatve and cost-effective solution.


Does'nt this smack of institutionalization? I always thought of institutionalization as cramming people in a big grey ugly stone building with bars on the windows and few facilities other than rubber rooms and straight jackets. This place is Gorgeous!!!!! It's a protected open compound featuring lovely living facilities and everything anyone could want in terms of daily living....plus it would still be open to the public, family and friends. No one would be isolated or imprisoned.

Why would I prefer that my son live in some small cramped private apartment with a few other people living the limited life of a child-man who can't leave the house without an aid when he could have the run of an entire ex amy base custom redesigned to meet his needs and full of people who understand him??? where all the activities and things he enjoys or needs are within a five minute walk?? amongst a population who is not going to worry if he stops to hug a tree or chat with the mailbox? Where he could work for a little cash perhaps, or tokens, for the movies, icecream, computer time.... whatever.... and not be penalized by the real world's standards that he cannot possibly comprehend or adhere to???

It's a nice thought to integrate the mentally disabled community into the real world and I am all for that. But lets be realistic. How many group homes are being built every year in good communities and safe neighborhoods??? Wyckoff, NJ finished one last year to house 6 people...it cost 2 million dollars. That's cost efficient??? You havent paid for the running of the house yet, the transportation of the clients or their programs.And if they are as frail as my son they are virtual prisoners until someone chooses to take them to a mall.


I have mentioned this to an advocate or two and received some surprising reactions. Not everyone is thrilled with the idea of concentrating the handicapped in one area....... and it goes against the currently political cherished notion that all handicapped people must and deserve to be and WILL be integrated in the community. Yes. Well. I see how well That's working out. Aside from the 20 year waiting list issue, take a little stroll to the fringes of any urban community and gaze upon the human wreckage trying to stay warm over the gratings of heating vents. Most of those people started out just like our kids.....mentally handicapped or emotionally disturbed.... and simply fell through the slats for lack of facilities to house them, educate them.... and people who care enough to make sure theyre Ok and stay Ok.. Let's face it- the only handicapped people who have a chance are the ones coming from organized dedicated families with money and time to push for their rights. Not everyone was born blessedly into those circumstances. I don't see communities placing handicapped housing at the top of their list, I don't see hordes of people volunteering to share their neighborhood with the mentally ill and the emotionally disturbed and with house construction prices hovering around the 1 million dollar mark here in New Jersy I don't expect to. But here, right here in own own Garden State we have a fully furnished empty city, just waiting to be of some good service other than bird watching.

What about increased traffic? I'm no expert...but....I can't really see that would be a problem. Most autistic/ handicapped people dont drive and don't have cars. It would be a private area so only the people who worked there and the visiting relatives would really be coming and going.

Does'nt this cut people and tourism off of the wildlife trails? . No, actually, there's plenty of wildlife areas for people to enjoy in the area that will not be impeded by Fort Hancock being screened off. And even if it were I can't believe anyone would put bird watching over the welfare of autistic or crippled or blind or retarded children and their heartbroken families. Would anyone really want to admit to that??

My question to New Jersey and the Federal Government is.....are there plans extant for this property? above and beyond the historical aspect?? Would a great enough show of support inspire the right people to create something productive out of this area? We personally would propose that a pilot program be instituted in at least one small one section of Fort Hancock for starters, to transform it to a gated community Retreat of sorts serving the needs of the disabled community of Southern Jersey and it's surrounding environs. Handicapped people of all levels of skill could be accommodated with the higher functioning indivduals aiding people less abled and in need of greater care......you know there are many perfectly capable people with education, experiance and talent whose lives are tragically curtailed by the physical and psycological limitations of the real world. This doe'snt have to be.

The handicapped and disabled population of our country deserve an environment of dignity and support. No one is suggesting we spend billions of dollars creating them the ultimate playground...cause it ALREADY EXISTS!!!! We see this as a miraculous silver platter opportunity to give our kids -our loved ones -our babies-happy homes where they can strive to be as independent and constructive as possible.


For two hundred years Fort Hancock guarded these Jersey shores from foreign invasion ensuring the rights of all Americans to live, work, and play according to their own choices and guaranteed by the Constitution. We see this possible metamorphoses as a way the Fort can continue to protect and serve the most vulnerable citizens of our democracy.

Tara Terminello

 

Photos Taken last spring

Typical homes for the officers, turn of the century. Would make a wonderful group home.

Empty for decades.

Lots and lots of space for baseball playing, a swimming pool or community garden.

 

 

Officers Row.

Interior of dining room

Any parents out there willing to roll up their sleeves and get to work??? Especially if NJ gives them a major tax break??

 

The interiors are charming

 

Evenings can be occupied with the Rec Hall...or going to the movies. They could even put on plays.

 

Fixed up this would be a terrific building for offices, formal occasions, holiday celebrations and VIP guest accomodation.

More than enough facilities for offices, school rooms, therapy centers, arts and crafts, a hospital, stores, machine shops,you name it.

 

 

Plenty of room for college students to live and work and earn their degrees in special ed having serious hands-on experiance.

More space for more facilities.Why not connect with local businesses to get some of their assembly work done here?

The 18th century lighthouse, the only seriously historical thing on the base. Tours could be given on an hourly basis.

A Sample Day

Here's a typical day I would imagine to be happening at the Fort Hancock Retreat

7 am. Wake up in Victorian cottage by the sea and have breakfast with 3 house mates and your aide.

8-9am. One hour of doing chores around the house....dishes, beds, vaccuming, mowing the lawn, etc.

9am- 12pm.Walk or take jitney bus down to the central compound to work, school, or therapy depending on individual needs..

Jobs available in the dining hall, the pizza parlour,the post office, the bakery, the machine shop, landscaping, offices, community garden, stables, janitorial, assembly work, guided tours of the Museum, stores {how about we persuade CVS to open a mini store on the grounds, even a Salvation Army store for the clients to work in and do their shopping???}light house tours or driving the jitney bus.

Classrooms would be open for anyone needing to take courses both academic and vocational. Any retired mechanics/plumbers,construction experts want to live at the shore for free and share their knowledge?

Physical and occupational therapy available, of course, including hiking, biking, horse back riding, arts and crafts,and swimming.

12pm. Lunch in Dining Hall

1pm-3pm. Back to work, school or therapies. Or enjoy visits to town and nearby beaches on the shuttle bus. Friends and relatives always welcome to enjoy the facilities with their loved ones.

3pm to 5pm free time back at the house, relaxation time, personal stuff time, etc. Or go to the Library and the Computer Center.

5 pm to7 pm. dinner time at the Dining Hall.

7pm -10pm. Socialization time, go to the movies, enjoy visits with family and friends, hang out in the Game Room, go bowling, evening walks in good weather, weekly dance party on the weekends.

This is the kind of day I would visualize fo my son. I'd love him to have all these options for growing and developing and becoming the best...and most constructive person... he could be. Personally I think this is a fantastic option for many of the 8000 people waiting for homes and services in NJ...what do you think????

Taraterm2@aol.com