Letters

I just wanted to send a message to you in behalf of our son, my husband, and myself to thank you profusely for including us in your agenda in the meeting today with Governor Wolf. It meant so much to have our story heard, and feel like we might just be a tiny bit closer to getting the services my son so desperately needs and desires. The meeting was very informative and extremely well done.

We would love to assist in the ongoing journey of getting the services for all the children that need it on the waiting list. Please let us know if there is any way we can be of service to your organization, we would all be happy to pitch in any way you might need. We also were wondering if there are particular representatives to contact for advocacy in Pennsylvania, as Governor Wolf mentioned in the meeting. Thank you again for everything you do for all the kids on the waiting list!

Most Sincerely, Lisa, Dan and Eric Heppard

Vision for Equality’s Advocacy Department makes a difference every day, one life at a time. A 20-year old woman with an intellectual disability spent the past 3 years of her life in a dark room, while being abused by her own grandfather. Nothing was done until Vision for Equality got involved. A few weeks ago, they were finally able to remove her from a dangerous and destructive situation together with local law enforcement and her perpetrator was taken to jail. Today, the woman lives in a safe home and is receiving the support she needs. For 17 years, VFE has been helping the most vulnerable people in society and giving them a chance to fight back.”

The below is one of the finest pieces of advocacy in difficult times that I’ve ever seen. Keep up the good work!!!

“I’d like to share with you my experience on a visit I made recently to Vision for Equality, a social service agency in Philadelphia. I met with families who had adult sons and daughters with severe intellectual disabilities. Because of their conditions, they face challenging lives. And it became even more challenging because they “aged-out” of the services the state provides for children.

They were put on a waiting list that delays their access to the help that would allow them to work, to live at home, and enjoy a full measure of life’s experiences. But these families would not let these disabilities and the waiting list stand in the way of their dreams.”

Former Governor Tom Corbett, Pennsylvania

Dear Deputy Secretary Lokuta,

I am writing to you today to thank ODP for funding the Training Partnership to assist families in the Commonwealth. Our area, Hazleton, falls under the territory for Vision for Equality and we have been fortunate to work with them on numerous occasions.

I am writing this letter on both a personal and professional level. Professionally, I work as the Marketing Director/Project Director for the Anthracite Region Center for Independent Living (ARCIL) in Hazleton. In this capacity, I have arranged several trainings regionally that have benefitted our consumers and their families. One presentation was offered by SAU1 and well received in our school district, one was offered by Visions (presented by Lisa Tesler) and one by the Latino Project at Visions. All were wonderful – professional but friendly – and all received the highest praise.

We were especially grateful for the efforts of the Latino Project at our last presentation! Ana Pacheco was gracious and helpful to everyone who attended. This was a difficult presentation because we had non-English speaking family members in attendance who truly believed that waiver was a negative thing and wanted to turn down the waiver that their child had been offered by Luzerne Wyoming MH/DS (no fault of the MH/DS office! Rumors run wild about waivers for some reason!) Ana handled their questions and comments with knowledge and skill.

Future presentations here in Luzerne County are already in the planning stages on a number of topics and we are grateful to have the help and cooperation of the folks at Vision behind us. We are co-hosting with the Hazleton Areas School District on one presentation and the Luzerne-Wyoming Counties Training Council on Quality for two others. We are very excited to have the added benefit of Ana and Emilio working with us for some of those events to reach our Latino population who would not otherwise participate.

Personally, I am the mother of a very involved young man (William J. Francis, III) who receives waiver services in Luzerne County. Since the disbanding of the PAC, information is something I always feel the lack of up here in Northeast PA. The folks at Vision and the Training Partnership help to relieve that feeling of isolation with their insight and resources.

Again, my thanks to ODP for funding such an essential entity and promoting the full spectrum of presentation experiences by including self-advocate training and Spanish language trainings.

Sincerely, Diana M-S

Dear Vision for Equality,

I wanted to take this opportunity to let you know how grateful my mother and I are for all the help and support we received from your agency. My sister who is 49 years old and severely mentally disabled, recently moved into an ICF in West Philadelphia. Our advocate, Emilio Pacheco, was always there for us. He took the time to explain the overwhelming and confusing process in a way we could understand. Emilio attended countless meetings where he not only provided support, but asked questions we would never have thought to ask. During times when the process was not going smoothly, Emilio made sure we knew what our options were and advised us with my sister’s best interest in mind.

There are times in your life when someone comes along who you are truly grateful to know because they have made such a difference. For us this person is Emilio. The support and guidance that he has provided through your agency has meant more than words can ever express.

Sincerely, Amy

Dear Vision for Equality,

When Anthony was born he was placed on life support after a brain bleed. He wasn’t expected to live. When the life support was removed our battle began to bring him home and help him grow to his fullest potential. Anthony has four brothers who love him but live in the shadow of his needs. He also had a sister who would be 13 had she lived; she was born with Edward’s Syndrome.

Our hope for Anthony was always to be a part of the family and community the rest of us are, we didn’t put him in an institution, instead choosing to care for him at home despite his profound needs. By choosing this for him we have saved the Commonwealth the hundreds of thousands of dollars institutional life would have cost.

He has multiple disabilities and requires total care. He can’t be left alone. He has a co-occurring mental illness and his needs have increased as he’s aged. Two his siblings have mental illness and my attention as a parent is stretched very thin. Anthony’s father is not active in his life. I can’t hold a full-time job because of his needs. I work 4 part-time jobs that barely support myself and my children. I forgo my own benefits to keep my schedule flexible to accommodate multiple doctor appointments. Not to mention the hospital stays when he chokes or the times when he misses school because his mental health disorder interferes with his ability to function.

Anthony will be 18 in March. He’s in high school now in an inclusive setting, just as he’s always been educated. He can stay there is his vocational school until he’s 21. I’d love it if he could graduate and obtain competitive employment but with all his needs, this will be a road with many hurdles. He needs a consolidated waiver. If he doesn’t have funding when he graduates I will no longer be able to work. There will no one to stay home with him. His two younger brothers and I won’t be able to survive on his SSI check. I’ll lose my house, my car, and everything I’ve worked for. Our family will be devastated.

We want Anthony to be a productive member of society. I want to remain one and to raise his sibling the same way. Anthony deserves that.

Sincerely, Anthony’s Mom

Dear Vision for Equality,

My name is Mrs. McDaniel. I have a daughter, Ayamma who is in need of funding to use in a day program that offers social skills. She recently had an appointment at PDDC and she was accepted. Then a fund out there is no funding. Ayamma has down syndrome and type 1 diabetic which has kept her out of programs because there was no funding for a nurse. Her doctor has added a pill with her morning insulin so no insulin has to be given at lunch and Ayamma wears a monitor that will beep if her sugar goes low so all staff would have to do is give her juice and a snack. Ayamma is 26 years old and she has overcome two cataract removal and she has 2 lens implants, but because of the cataract, she became more dependant. Example: Even though she can see better, she still needs me to walk her up the steps to the bathroom. I know that a social employment will be good for her and will help her to be more independent.

Mrs. Valencia McDaniel

Dear Vision for Equality,

My name is Erica Curtis and I am 23 years old.

Currently, I work part-time at Vision for Equality and I live in East Mount Airy with my family.

The waiver provides transportation for me to get to work, enjoy community activities, and allows me to continue to live at home.

It helped me graduate from Temple University’s Academy for Adult Learning, and utilize community resources such as overnight summer camp.

While at camp I got to enjoy time with new friends and lost 30 pounds from lots of outdoor exercises.

I’m sad to know that people with disabilities are being placed in institutions and don’t get Waiver opportunities like I have to live, work, and enjoy life in my community.

People can grow and do well when given a chance and support from the waiver.

Institutions are not ok, community living is definitely the way to go.

Thank you, Erica Curtis

Dear Vision for Equality,

My name is George Maule. My daughter Shirley is 36 years old. She is retarded from birth and with her condition comes many problems. She is obese she weighs about 300 lbs. We cannot get weight off because she will not follow instructions to walk and move more. She has asthma, she should be taking oxygen and abutol at least four times a day, but she refuses to take it or if she does she throws the cords on the floor. She has high blood pressure, high cholesterol, dermatology issues, dental issues, pulmonary issues, podiatral issues, arthritis in her knees which makes walking very painful. She has sleep apnea. She also sees a cardiologist. She has to be taken everywhere in a wheelchair. She cannot bathe herself, or feed herself or dress or clean herself in the bathroom. She has a rare symptom called “Rubinsteins Tabes Syndrome” which brings all the (not legible) problems with it. She will not go to doctor appointments. We are constantly canceling appointments and of course, we lose doctors along the way because of it. We cannot leave her alone ever. She needs constant care at a facility. She will listen and follow instructions from Anthony, but not her parents. I will be 68 years old next month. I have many physical problems of my own along with my wife. My wife walks with a cane. She needs knee surgery, she suffers from depression. She is 63 years old. We need help we can not cope with the situation any longer.

George Maule

Dear Vision for Equality,

My brother James Sullivan, is a 57-year-old male with moderate mental retardation. He was educated at a private catholic school that focused mostly on daily life skills training. Consequently, his ability to read, compute numbers, and to tell time are very limited. Since this was a private education, it was paid for by James’ parents without any supplemental state funding, as they did no believe in feeling like a burden to the state. But now it has come to a time in James’ life that he does require supplemental help and support for his very survival.

James’ Medical Condition

• Preliminary diagnosis of Parkinson’s disease. Appointment in February, which will be approximately a three-month wait to see a neurologist- difficulty with mobility and self-care. James’ gait is slow, unsteady and he walks with a limp. The family is fearful that he will fall down the stairs while outside of the house.
• Liver disease-limited follow-up care
• Gum disease-limited care at the University of Pennsylvania dental school as there are limited funds to pay for treatment
• Anemia
• Foot calluses-painful condition that impairs his ability to walk, unable to get a standing appointment at the health clinic for removal
• Hypertension
• Respiratory disease-limits mobility
• Weight loss-poor appetite

Activities of Daily Living

• James is not able to prepare his own meals
• Can’t clean his living space
• Unable to do laundry
• Can’t shop for himself
• Poor Hygiene—due to medical conditions-unable to get in and out of the bath so James can’t take a shower or bath. He cleans to the best of his ability at the sink
• No transportation other than Septa for doctor appointments—unable to walk to the bus stop because of callused feet and Parkinson’s
• Receives no in-home support
• Difficulty getting up and downstairs

Psychosocial Concerns

• Recently evicted from home that he has resided in for the past 20 years
• Displaced from his community and natural supports in the community
• Unable to get to the church where he receives spiritual and emotional support
• Current living arrangement are temporary and he will have to vacate within three months with no current displacement plans
• Anxious and depressed as James does not have any social or recreational outlets-turning to beer and cigarettes for comfort
• James is being cared for by his 84-year-old mother, Virginia Sullivan who too has multiple health conditions including pulmonary hypertension, heart disease, arthritis, pre-diabetes, and signs of dementia. Needless to say, she can no longer provide much support in taking care of James’ daily needs and she is struggling to take care of herself! Virginia asked me yesterday, “How are we going to get clean clothes?” and she stated as I was cleaning the kitchen and cooking dinner, “I would love to do more than sit here and watch you, but I feel this is all that I can do right now”.
• As James’ sister, I wish that I could do more. I have responsibilities to my family—two daughters, and I work outside of the home, and live 30 miles away from my brother James and my mother Virginia.

I am not certain what the future holds for my brother with his failing health, his declining emotional status, and his inability to take care of his daily needs. His parents have always worked and provided for him, but now that support is quickly disappearing. Now is the time in James’ life when he and his family have to humbly ask for help.

We thank you for your consideration.

The family- James Sullivan, Jr., Virginia Sullivan, Linda Sullivan-Webb, Gail Sullivan-Ford

Dear Vision for Equality,

Everyone should be ashamed of yourselves because of what you are doing to all disabled people by putting them back into a place where they do not belong. I am so sorry for sounding like this but I have been through this my whole life and people like me should not be in a place where no one will ever come to see them and leave them to rot. I am a Pennhurst class member and I was asked to talk to the judge about living in a place where I did not belong. I did and now after all this time and hard work, I am living on my own with some help from friends and from an agency and I also sit on a lot of committees and boards. I am the President of a group called Pennsylvania TASH and I also sit on 4 more boards and I am very famous with a lot of people and if you say my name, people will say, “yeah, I know her and she has a lot going on in her life”.

People are so proud of me because what I have been doing with my life. I am a self advocate who travels all over alone telling people my story about living in a place where I did not want to be and how I can make it in this world with some help from friends and strangers but I am a fighter and I do not stop until I get what I want in this world.

I think the State should take this to heart and STOP HURTING ALL DISABLED PEOPLE who really need the help. Instead of worrying about “winning”, you should let us win sometimes! We win when we are in the community and not locked up in an institution.

Thanks and God Bless. (you should all be ASHAMED of yourselves)!!!!!!!!!

Sincerely, Jeane Searle

Co-President, of Pennhurst Memorial Preservation Alliance

President, Pennsylvania TASH

Board Member, Vision for Equality, Inc. (former Vice-President)

Board Member, Developmental Disabilities Council

Board Member, Arc of Pennsylvania

Receptionist, Pennsylvania Disabilities Rights network

Speech to PDW at the Vision for Equality Building Office, Philadelphia, PA

Good Morning! My name is Lynn Powell. I am here today to speak for my son, Robby Powell, who will turn 21 in June.

Currently, we have NO options available for him in either an Adult Day Program or within any Residential Program when he ages out of the Special Education system in PA this coming June.

I have looked at these options in my area for several years but I’m devastated by the lack of stimulating environments, severe lack of trained personnel, and numerous safety violations, in addition to the glaring reality that most programs do not reflect or support the most important piece they need: a successful transition into the community, and many don’t even include “community outings.”

The government has mandated that these individuals who have reached 21 be moved into an independent program so they will “contribute to their communities” – yet, where are the supports to successfully make these goals possible for these citizens? The disabled population will, of course, reach the Elderly Age….so this impacts both areas as well. My son has been on the PFDS waiver, because of his Mental Retardation diagnosis. The program HAS indeed helped him and we are thankful for it, yet it will not even cover what Robby faces or his future in June. The cost for him to transition to an Adult Day program is not covered in the PFDS waiver. He already qualified for the Consolidated Waiver years ago but has been on the “Waiting List,” which is really not the two years they have told parents…it is much longer than that and we don’t even have two months to wait.

I am unable to physically care for my son as the primary caregiver because I have my own physical limitations. I have had – and still – several operations, plus my husband is also unable to physically care for our son because of his health.

My son was born unexpectedly premature at 26 weeks gestation and has Cerebral Palsy, Intellectual Disability (with an IQ of 51), Autism Spectrum Disorder, Epilepsy (with daily seizures – including Grand Mal seizures). We never know which type of seizure – or when, or where – these will occur. He also has Sensory Integration Disorder and Auditory Processing Disorder. He cannot read or write but he CAN contribute to society and there IS something for him to do out there but we have not found a program for that yet. He loves to sing and make announcements; e cannot work in a regular job due to his cognitive ability of a five-year-old and his attention span of 15 minutes and must have skilled nursing assistance every day.

If the waiver program is “available, yet not available”—how is that helping the ones it claims to serve? Many of the very community programs don’t even take them out into the community at all or are short-staffed and cannot provide daily hygiene or medical attention to those they have in their facilities because of cost-cutting measures. The ‘cookie-cutter’ model cannot work for everyone because each of us has their own gifts and needs to succeed in a community. Without the Consolidated Waiver funding for my son, which he has already qualified for, he will remain at home and regress; he will lose opportunities to attend community functions, church, participate in community events, sing, laugh, or grow and be happy around others in his own community environment, and will miss his medical appointments.

My son needs skilled nursing just to get through a normal day, have proper medical personnel monitoring and treating him for his daily seizures, and care for his basic hygiene needs, including bathing, plus all activities of daily living. He also must be able to get to his own medical appointments and during the day and be in a safe program with medically supervised staff.

We are very grateful for the current nursing services he receives now, but this was only granted through his insurance after a 4^th level appeal. These nursing services will also end when Robby turns 21 yet he will always need skilled nursing assistance because of his seizures and medical issues he faces every day; an “aide” that has had no medical training or disability training will cause this plan to fail and my son to risk his health and safety.

If Robby does not receive the Consolidated Waiver funding, I must stay at home with him and risk further injury to my own medical condition; plus I will not be able to go to my own medical appointments, or to physically take my son to any of his appointments, nor get him to any available Day program, if indeed one becomes available. Just because he is aging out of the education system, he cannot be on his own and independently he cannot “work” in a workshop and focus on collating papers for hours, or putting boxes together all day because he cannot even focus for one hour on a task or be expected to do work for 5-8 hours/day.

Are we risking being honest here by sharing these truths, and then having to worry about repercussions of a committee who may only further cross off these members of society deemed “too needy” or “too costly” By sharing our stories, we are exposing the truths and dreams plus our reality and mine, as a caregiver, mother, and spokesperson of a family member whom we love and desire to live a fulfilling, safe, and meaningful life.

I agree and promote independence for all individuals, but it must be applicable to each one’s ability with the safe supports and managed criteria within the communities to help them succeed. The one-size-fits-all program will fail. My son needs services to be in place now and he should not be forced to wait for the red tape to become untangled for programs you have promoted, yet are withholding for reasons not even matching the defined criteria. He IS eligible, has been eligible and without this, his health, safety, and well-being will be severely compromised and will, adversely affect future costs for the state. Sadly, his Transition piece from the Special Education component is not a successful one that reflects a good future right now and we are playing catch-up now in his final year in school because of the failed programs he was in several years ago. Perhaps you may share in the suppressed outrage of a parent over these conditions that still prevail in our school districts special education classes, regular classes with resource rooms, Intermediate Units and Segregated programs; I have personally witnessed teens being forced into “the closet” while they are yelling or screaming – is it because of auditory overload or being forced to focus on something they cannot do in a classroom; or seeing the classroom door with a window covered up with black construction paper so no one can see in – or is it out? Why is it even covered up at all? My son was forced to “fold towels” for 43 min. while his classmates made cookies and interacted socially and laughed. When I asked why he could not participate in this sensory and social cooking skill, I was told, “Because he drools”. By the way – the cookies were never baked. The dough was thrown out. This was in a Special Ed Intermediate Unit program here in PA. I share these personal stories because these programs MUST prepare our kids for Transition: and Transition helps prepare them for the Community and yet – are they ready for our communities? Do the communities have the support they need even though they may overlap?

Every individual has a gift to offer and only supports for their creative abilities and personal gifts, plus an option to support them either in a residential home, group home, live-at-home, or other community environment, will these gifts manifest and their true contributions to society will be successfully displayed.

We hope to work together with you and help provide support, dignity, and respect to our most vulnerable citizens in society! We look forward to working with you toward successful solutions. Some of my suggestions include:

• Improving their quality of life;
• Alleviate Caregiver burn-out with supports for family members;
• Revamping the current monitoring programs of staff in Group, Residential homes, and Adult Day programs;
• Improve supervision and training of staff for Waiver programs and options for Day programs
• Provide more information and resources to families to curtail the majority of responsibility of family members;
• Assist them with this information and keep updated and monitored.
• Governor Corbett states in his campaign promise that he “values all children and adults with Intellectual Disabilities as fully participating members of society and that he understands that their desire to achieve their full potential, and he will work to provide them with the support that they need.
• The supports they need are necessary RIGHT NOW so I respectfully request your attention by directing you to implement these supports and portray PA as a role model for the country.

Eleanor Roosevelt, a great advocate for civil rights once said, “The future belongs to those who believe in the beauty of their dreams.” Please help support the dreams of our family members with disabilities so they CAN have a successful future!

We are counting on your support, leadership and commitment to our families; we need you to be OUR champions and speak up about our disabled community members to Congress; we need to all make personal and professional sacrifices but let’s what focus on what we CAN do and support the disabled communities and families with the funding to make this happen in PA!

Thank you for coming here today to meet us and listen to our stories!

Lynn Powell, Parent, Wallingford, PA

Dear Vision for Equality,

I’d like to introduce you to one of our citizens, our son Renzo.

Here is at age around age six, playing little league baseball, and again at age eleven, practicing beloved saxophone. He went on to develop a passion for the guitar he bought with his own money, earned by walking the neighbor’s dog and babysitting. He loved school and was a good student.

Here he is at age fourteen, in a month-long coma following a cardiac arrest during Presidential Fitness testing at school on May 21, 1998. We did not know he had an underlying condition called, Long QT syndrome.

This next picture was taken four months later when he returned home severely disabled by an anoxic brain injury, caused by his cardiac arrest. We were strongly advised to place our son in a long-term living facility but we couldn’t bear the thought of being without our only son. Neither would he have survived or prospered in an institutional setting so removed from those who loved him.

We didn’t know what to do, how we could afford to take care of our son. Should we have chosen to let him die, as a cardiologist suggested we might do? He could no longer walk, talk, eat or maintain any control over his body. He couldn’t even smile. Our health insurance company would only pay for 8 hours of night nursing care. The remaining 16 hours of daily care were left to my husband and I who were emotionally devastated and physically exhausted beyond comprehension.

Without a first floor bedroom, our dining room became Renzo’s bedroom, furnished with a hospital bed, a machine that would pump food (mixed with medications we measured and ground) through a tube into his stomach, an oxygen tank, and a cardio/pulmonary oximeter that measured the oxygen of his blood and his heartbeat. Without a first floor bathroom, we used water in a stainless steel salad bowl to bathe our son and shampoo his hair. We did everything for him, including changing his diapers-how humiliating for a teenager!

It was months before we learned our son might be eligible for critically needed funding through DPWODP (then OPR) Community Based Services and years before he began receiving adequate support through Consolidated Waiver. Meanwhile, friends and neighbors in Bethlehem raised funds to build an accessible bedroom and bathroom. They even organized to bring us dinner for a full year while we struggled to adapt to the life we’d been given.

My husband and I are now both over 60, feeling older most days from the stress and sorrow of the past fourteen years. Neither of us is physically able to care for our son on a daily basis any longer. We are concerned about Renzo’s future and ours. We’ve drained the equity from our home to purchase a small accessible house for our son, hoping he will never be institutionalized or arbitrarily placed in a group home, and purchased a used wheelchair accessible van that his staff can use to take him to the therapies and other activities.

Our son is now twenty-eight, has improved significantly beyond prognosis, but is still dependent on 24/7 support staff to help him relearn how to eat (after help to get the food on his fork, he can get to his mouth), drink (with a straw), and shower and toilet (he remains incontinent). His staff are amazing people. They help him to cook, clean his house, do his laundry, and they drive him to his activities and therapies, reinforce his speech, occupational, and physical therapy goals, and care deeply for him. Their minimal salaries are paid through Community Based Services, ODP Consolidated Waiver funds. They are taxpayers.

Renzo is now living a valued life, despite severe disabilities. He can smile now. He has been a proud employee of the Martin Guitar Company for ten years straight, working two hours a week wit ha staff person assisting him. He is pleased to earn his own spending money. As well, he vies back to the community by volunteering with pre-school children at Easter Seals every week. He is a good citizen of Pennsylvania.

We have been extremely frugal with waiver funds and continue to contribute as much of our resources in time and money. As well our friends have formed a Circle of Support that metts monthly, finding no-cost ways to help in every way they can. Still, Renzo is dependent upon public funding for survival. Please don’t consider funding cuts for Community Based Services as a way to balance our budget. Renzo, and many others with intellectual disabilities served through ODP, are our most vulnerable citizens. They are our shared responsibility in good economic times and bad.

Perhaps a better alternative to our budge concerns is to invite large corporations, such as Chevron, now profiting from the Marcellus Shale natural gas production, to contribute their fair share to meet the very real needs of the people living with disability in Pennsylvania. We have already lost more than $130 million in tax revenue that was, as I understand it, partially slated to fund ODP. It is immoral to continue to support corporations, now showing record profits, over the needs of people who have no other options in life. People with disabilities are also employers enabling many without college degrees to have meaningful work.

We look to your guidance at ODP to find fiscally responsible ways to appropriately and respectfully serve the people of Pennsylvania who are diagnosed with intellectual disability, through accident of birth or mid-life crisis such as brain injury.

Sincerely yours, Cheryl Dougan

Dear Vision for Equality,

Bruce Bernstein resides at a group home in Philadelphia.

Bruce was savagely attacked by his roommate on September 1, 2011, at 3:30 AM, while he slept in his bed. His roommate “head-butted” him numerous times and fractured his left eye socket and broke his nose. Two one on one caregivers were in the small apartment at the time of the incident.

The police and 911 were called. Bruce was taken to the trauma unit at Aria Frankford Hospital. The roommate was committed on a 302. Bruce required surgery to stitch his face and eye back together. He spent 8 days in the hospital.

It is now 4 months later and Bruce is still recovering. He does not talk about the attack. His affect and demeanor are bland. He requires topical medication, eye drops, antibiotics, and possibly more plastic surgery. The behavior therapists think that Post Traumatic Shock Syndrome is a real possibility.

After this ordeal, we thought it was unconscionable of the mental health system that he has another roommate. But now, as of January 11, 2012, a new roommate moved in with him.

We are now turning to you for justice for Bruce. He needs to live the rest of his life without fear of a roommate. He has a relationship with his one on one caregivers and he needs the peace of mind that he will not be attacked again in his own home.

We thought, as siblings, that PATH would provide a safe, nurturing, clean home for him. Now we are scared for his life.

PLEASE consider, at this time, when Bruce is so fragile, reversing the roommate decision and granting him a single person residence with his one on one caregivers.

Thank you, Sheilah Kalderon and Sidney Bernstein, Bruce’s Siblings

Dear Vision for Equality,

My name is Sharon L Duckett. I am the mother of sixteen-year-old Twins with intellectual disabilities and on the autism spectrum. I also have a disability, wheelchair-bound with disintegrating health issues and I am in fear that my beautiful daughter and son will wake up to a nightmare one day not being able to live at home in the community they know and love. I thought the Constitution of the United States guaranteed “Life, Liberty and the Pursuit of Happiness”? Home is the only life they know, home gives them freedom to explore their dreams and home is a place where the love is overflowing thus producing happiness. To cut services and supports you will make it impossible for children with disabilities to continue to stay at home they will end up in Institutions that are sterile, cold, lonely with no love… No freedom to turn your lights out when you want, no happiness a place where the common necessities are not spoken that often like… Good morning, thank you and more important that I Love You. Institutions can’t hug them tight, give them a kiss, wipe a tear and console and comfort them. Institutions are a place where all human qualities are gone when you enter…It is dehumanizing… It is confinement like jail…Yes it might be state of the arts, beautiful appearance, programs galore but the truth is … It is a holding tank of lost dreams where you wait to die. I pray to God every night this is not the future for my twins. Let us be proactive and find more funding for programs like Life Sharing, Independent living homes, and apartments etc., find the dollars needed for our children to remain at home in their communities. “THERE IS NO PLACE LIKE HOME” I remember Dorothy holding Toto in The Wizard of Oz realizing she possessed the power to go back home… She closed her eyes and clicked her heels together and repeated those words “There is no place like home” three times and magically she was transported home. Our children trapped in these Institutions clicking their heels together will only result in scratched up shoes. So I like Oliver Twist in “A Tale of Two Cities” dare to beg for more, more supports and services to keep our children at home ” More Sir Please More”!

Sharon Duckett

Dear Vision for Equality,

Having a child with complex medical needs, we were repeatedly denied medically beneficial care as a handicapped newborn. This was detrimental to my child. We have no been able to access county services as they only assist those with Mental Health/Mental Retardation. Those with physical and learning issues are not considered and provided with services. The Medicaid plans do not coordinate with all of our providers, so many of the costs of medical care fall unto the parents.

Due to the complex needs, there is only one provider locally. Second opinions are out of the area and M.A. doesn’t want to provide second opinions. They try to keep you in a system that does not have the correct care.  (Had we obtained proper care years ago, we may not have some of these issues now.)

The School District has not wanted to identify or provide services. They don’t want to consider the outside evaluations as it cost them money to acknowledge the learning needs. Fighting an expensive due process that the District initiated to get rid of the problem parent/child.

Medical conditions that could be medical or mental health, such as neurological. Providers get paid depending on how it is billed Medical or mental health codes. However, consumers don’t know it will be billed and the docs need to be in the Correct Networks. Took six oral surgeons and 1.5 yrs to find and unusual dental problem. Then they didn’t know if the surgery would fall under medical or dental coverage.

We have had numerous insurance changes due to employers changing plans. It means we continue to start again with new Doctors and Try to retain those that we like and no have to start over year after year. After 13 years we have had numerous docs, few that have been with the child continuously, and at least 8 primary insurance plans.

The system doesn’t work well and we have been unable to access some really specialized care and services.

Susan Schmidt

THE SPECIAL MOTHER

By Erma Bombeck

Most women become mothers by accident; some by choice; a few by social pressures, and a couple by habit.

This year, nearly 100,00 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son, Patron saint Matthew.

“Forest, Marjorie, daughter, Patron saint Cecilia.

“Rutledge, Carrie, twins, Patron saint…give her Gerard. He’s used to profanity.

Finally, He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious, “Why this one, God? She’s so happy.”

“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel.”

“But she does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair…once the shock and resentment wear off, she’ll handle it.

“I watched her today. She has the sense of self and independence that are so rare and do necessary in a mother. You see the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”

“But Lord, I don’t think she even believes in You.”

God smiles, “No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps. “Selfishness? Is this a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, her is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied.

“she will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘Momma’ for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint? Asks the angel, he pen posed in mid-air.

God smiles. A mirror will suffice.”