AZ Families to start feeling brunt of DES cuts

Here we go again, why not take away from the most vulnerable citizens, children with special needs. Please pray with us that by some miracle these families will find what they need to continue their services.

Families to start feeling brunt of DES cuts

Intervention care for disabled babies not covered for all

Posted: Sunday, January 31, 2010
By Patty Machelor

ARIZONA DAILY STAR read article here

Families receiving services and support for babies with possible developmental disabilities will soon shoulder the cost.
Early-intervention services for at-risk infants and toddlers are federally mandated, and have traditionally been offered without expense to Arizona's parents.

Now, the state is in the process of gathering financial information from 2,509 families and caregivers. Families are required to sign an "acceptance of cost" form by March 1, according to a recent letter from the state's Department of Economic Security.

It is unclear how many will continue to receive free services. Parents and legal guardians with incomes below twice the federal poverty level will not be charged. For a family of four that would be $44,100. Parents with more than one child receiving services will need to pay for only one child.

Brooke Myers, an early interventionist with the nonprofit Desert Survivors, said there's "a lot of panic" among families already struggling to pay medical bills for their at-risk child.

"These parents already have a lot of co-pays from that," she said. "Asking them to now pay for something that's a lifeline is very difficult."

Desert Survivors provides support to parents and services to children. Myers estimates 75 percent of the 21 families she currently helps will have their funding cut. She said two families a colleague worked with have withdrawn already because they can't afford a co-pay.

Arizona's Early Intervention Program falls under the Individuals with Disabilities Education Act, and is implemented, in part, through the state's Division of Developmental Disabilities, said DES spokesman Steve Meissner. Federal guidelines permit states to establish a system of payments, and several states already charge for services on a sliding scale.

"It's a choice that we made reluctantly," Meissner said. "Our resources are shrinking, and we had to absorb a number of reductions because of the state's fiscal crisis."

The state does not reimburse families directly for these services but pays the provider, Meissner said. Providers, mostly therapists, might also bill a family's insurance or, for those who qualify, Arizona's Health Care Cost Containment System's health plan.

Families with an adjusted gross income above 200 percent of the federal poverty level will pay based on their income, family size and service costs. The co-pay will be based on a family's 2008 federal income tax return. Meissner said any changes since then, such as job loss or a new baby, will be factored in.
Maureen Dykinga, a speech - language pathologist, said the change is frightening for providers, who don't want to lose clients or see children go without services they need.

She said some providers will try to find ways to help their clients continue with services, even if the family can't afford it.

"There are going to be families who can't afford a co-pay at all and so there will be children who go without services, without a doubt," Dykinga said.
Monica Attridge, an administrator with the Arizona Association of Providers for People with Disabilities, said the recent letter follows cuts to service providers in May, when state reimbursement dropped to between 82 and 85 percent.

"The cuts have been fairly invisible to the families," she said, "up until now."
Contact reporter Patty Machelor at 806-7754 or pmachelor@azstarnet.com.

We Are the World

I always loved the message of this song, and read today they are remaking it for Haiti.

Pictures from yesterday

Big sis Julia and Kara, taken a few months ago...

Camo cat Harpy, the biter and scratcher of Amanda

Mom, what do you think, I cut my own bangs!

Piggy tails, Kara has finally decided to leave them in, hallelujah

Peek a boo, I see you

Why we think adopting internationally is important too

Amanda and Meghan playing ball, this is why I am grateful we were chosen to adopt our daughters, to hear their laughs and see how well they have adjusted to life in a family. Kara was napping, something sweet Amanda refuses to do most days... the video may not play, sorry. :o(

I have been reading blogs of fellow IA parents where they have had to defend their choice to adopt internationally. It is common for many people to look askance at you and wonder why you would travel thousands of miles to adopt when there are millions of kids in America in the foster care system, some who are available for adoption.

One of the first questions we were asked in 2006 was why not adopt here. We answered very simply; we wanted a little girl with Down syndrome, a specific little girl we had really fallen in love with.

However; when it came time for our home study, that desire was not enough. Our social worker really pressed the issue with us, why Ukraine? Why not adopt a child with Down syndrome here? So I will share the why’s and how’s of why we made our decision, you may not agree, you do not have to, we did not adopt to look good to others, to please anyone else, or even to get into Heaven, we adopted because we HAD to. We were called, the seed was planted in our hearts and heads and we let it grow.

Reasons we adopted internationally:

Number one: The children with Down syndrome here have hundreds of families waiting to adopt them, they are submitting home studies faster than you can blink and the birth parents have dozens of families to choose from, the need, the extreme life changing-life saving need for adoptive parents to a child with Down syndrome in America is nonexistent.

Number two: The children of Eastern Europe, Russia, India, China, etc, who are born with Down syndrome are often left at the hospital, parental rights surrendered, because these countries do not accept people with disabilities. It is easier to walk away that face the daily struggle alone, with no government support, no family support, and zero acceptance of your child. (When I use the word easy, I do not mean the parents were not heart-broken, I know they were, I know they loved their children, I know this because they had the courage to allow them to be adopted internationally, even though it meant they would never see them again. ) Some countries have emerging support systems for families who want to raise their children and I am prayerful they will continue to grow. These very brave parents will be able to change things slowly, but prejudice against people with disabilities is deeply ingrained in these societies.

Number three: The children with Down syndrome have no future outside of the institutions that house them. They are not allowed to go to school, and as adult (if they live that long) they cannot go to work, or get married. It is believed they have small brains and cannot learn, and since their societies believe this, many orphanages do not teach the children anything meaningful and the children become that which it is believed they are, someone who cannot do anything.
Number four: The children die untimely deaths due to abuse, lack of human contact, bad food, poor hygiene, poor conditions, and just plain neglect which results in failure to thrive. In the four years since we became aware of the plight of children with special needs in Ukraine, many children have passed away in the institutions they were sent to on their 4th or 5th birthdays, some within a year, and these children were not sickly, it seems that they simply gave up.

If you are one of the few people who read my blog, you already know all of this, if you are new to it, please let what I am explaining really sink in.

I have seen pictures of very well run institutions with laughing happy children, they are not plentiful and they are a relatively new idea in Eastern Europe; a 21st Century phenomenon. I have also seen videos and pictures of institutions that are barely humane. Pictures of row after row of beds with half naked or naked children, sores all over, many tied to beds, some with Cerebral Palsy frozen in pretzel shapes, limbs bent in positions no arms or legs should be in; I have seen 18 year olds the size of 5 year olds. I have wept many tears over these images and prayed many prayers for those children. America had places like this up to the 1970’s; so we are not all that different…we just stopped before these countries did.

Nothing about international adoption is easy. For some of us there is a lot of heartache and heart break along the way. Sometimes we have to take painful detours, some parents have to give up entirely, and some children we hope to adopt we cannot. We stress over getting county approval via home study and CPA checks, then state looks over both and hopefully gives us a certificate to adopt, then there is the FBI and Homeland Security for fingerprinting, and USCIS for national approval; all of these people do background checks to be certain you are worthy to be a parent, that you are financially, physically, and emotionally able to adopt.

You gather all the documents given by said agencies into your dossier and you submit your paperwork to the country you choose to adopt from, and you wait and wait and wait to hear if it has been submitted and rejoice when you get the news, and you wait again for an appointment date and you get that cherished travel date. The waiting gives you grey hair, you have done all you had to do to get to this point and all you can do is wait and raise money! Lots of money. It is extremely expensive, and you wonder how you will ever get the funds raised and somehow (via angels, miracles) the funds grow and you take this cash with you, nervous the entire time that you will lose it, or someone will rob you.

You finally travel to meet your child(ren) and they bring them in to you and all of the stress to get there falls away. It is just you and them looking into each others eyes, getting a measure of the other. You are in awe of them, and you know what a miracle it is that you are sitting there with them. Sometimes you are shocked by the appearance of your child, they are tiny, skinny, or seem younger than their chronological age. Oftentimes they smell rather bad because they do not get baths immersed in water. Nevertheless, you feel affection for for them; amidst the fear, the joy, the confusion, and the 10 pairs of eyes scrutinizing you, because even though you passed all the trials to get where you are, the orphanage doctor, inspector, and directors all have to approve of you too! They will be present at your adoption hearing to report that your child has bonded with you and wants to be adopted.

After living for many weeks in country (or waiting at home after that first, second, or third meeting) you come home with the child you dreamed of, or sometimes one God has chosen for you. You know you were part of a miracle, just as if you had grown your new daughter(s) or son(s) under your heart and warm in your flesh. You bond with and grow to love your sweet child and you expect everyone else to rejoice with you. Except sometimes with international adoption, it does not turn out that way. Sometimes extended family is slow to accept your new offspring. That realization can come suddenly or slowly and it is painful and you can be quite hurt.

During a visit a few months ago one of my sisters, whom I love dearly, voiced to me that children in America need families too, WHY did I have to go so far when I could have helped someone here. The accusatory nature of her comment felt like a physical blow, I could tell she had been holding in her feelings a while and that my choosing IA had made her angry and incredulous, and even though she wrote a letter supporting our adoption to the social worker, she did not wholly believe we did the right thing.

Earlier this month, as I was filling out Kara’s yearly adoption report for the Ukrainian embassy; there was a question asked about extended family and how they reacted to or supported our adopted child. I had no idea what to say. After a lot of thought I simply said that even though we rarely saw extended family, when we spoke they asked about Kara and sent her gifts, which is completely true. I also know that even though my sister does not understand IA, she still held and bonded with my daughters during that visit, that she is a loving giving person, and loves all children.

We are very well aware of the sad state foster care; my husband worked in the system in residential treatment facilities for over a decade. To be honest, the nature in which these children were abused would make it dangerous for them to be part of our family, as my husband knew all too well and why he hesitated to adopt at all, he felt I may not be prepared for the issues our children may have.

Parental rights are not severed easily in the USA, the system often places children back with biological parents where the abuse continues and escalates. When rights are finally severed, the children have suffered so badly many are emotionally scarred for life. I realize that some resilient children can escape their backgrounds relatively unharmed, but most cannot. They require a parent with knowledge and skills I feel I do not possess. I do not believe I have the patience or ability to raise one of these children.

We were not called to parent children in the foster care system; we were called to parent Kara and Amanda. Surely reason dictates that American’s should help American’s. However American’s, who have more money, food, and resources than most of the people in this world, have it within their power to HELP others outside of their country as well. We are all human beings, we are all God’s children, and all of us deserve to be loved in a family.

(to paraphrase) Once we become aware of the conditions that abused or orphaned children are forced to live, then it is our God-given responsibility to act. Some people are called to be foster parents, some to adopt troubled teens, or emotionally handicapped children, or kids with physical disabilities, the vision impaired, or hearing impaired. Our family was called to adopt children with Down syndrome; it is that simple and that complex.

Are we perfect parents, oh no, do we do our best, yes, and there is always love in our home, even when things go so nuts that mom needs to go in the back room to privately vent (scream) her frustration…after all, I am only human.

An update at long last

I forgot that not all of you are on Facebook with me. I reported on there that the girls did not see their dentist after all. We had to cancel the appointment because Amanda got sick the night before. She seemed better in the morning, but feverish, so we knew we could not have her sedated.

Meghan can get her tooth filled later. It is a baby tooth and I am not overly concerned as it is a tiny cavity (very tiny). Amanda was getting her teeth cleaned, both were getting X-rays. In truth, I am wondering why I would put my daughters through sedation for two very minor things. What was I thinking?



Our youngest son informed me he wants to move out of state, I am still trying to get used to the idea that he will not be in Tucson. I may not like the thought, but we all have to live our own lives, and if his takes him thousands of miles away, I have to accept it. Selfishly I hope he waits a while, he was going to take respite training and help me with the girls. I need a few hours a week away from home and I would rather a family member provide the care than a stranger. We have never used respite, we always had children who could help, but their lives are busy and they rarely have the time. Well, we also rarely ask them to babysit, we are true homebodies...

Julia has had a really bad month so far; her latest adventure involved being a passenger in a car that hit a tree. She hurt her knee, her head, bit her lip, and is lucky that she was not thrown from the car, she was not wearing a seat belt...she is hobbling along on her crutches. X-rays showed not broken bones, and Julia sees an orthopedic doctor Tuesday to be certain she did not tear any ligaments. I still feel haunted by the image of that car curled around that tree, and I am thankful the driver and her three passengers are all OK.

Meghan has been very opinionated and grumpy of late, we are thinking that her female hormones are beginning to increase, meaning she is getting close to the dreaded puberty. 9 certainly is not too young for the first surge of estrogen, I am NOT ready for this, I surely am not. She alternately seems like a small child and then boom, she is tweenie. Sometimes it gets confusing and I wonder if other moms have the issues I do about how to treat their daughters at this age; specifically daughters with trisomy 21. She is no baby, she is still quite young emotionally though, but I can see a young woman emerging too. The attitude is also very much there, that snarkiness they get at that age.

Her alopecia is progressing again. It completely stymies us and I find it depressing as nothing we do seems to help for a long period of time. I am grateful she still has her eyelashes and half her eyebrows, last time it was severe, she lost most of both. Her poor eyes were always tearing from the debris that got in them. She does have a lot of hair, just huge bald spots on the left side and no hair at the nape of her neck.

Kara continues to have issues with eating, wanting to eat, and crying if others are eating and she is not. She takes food off other family member’s plates, opens the fridge to get food out, and climbs on counters to find it in cupboards. Frankly I am at my wits end with her behavior. She is in time out a lot. The other day she broke the handle off the refrigerator, I guess all the times she and Meghan hung on it made it develop a weak spot. Kara does not seem to understand that she is full; she can eat as much as me at dinner and still want more food. We joke that she really has Prader Willis Syndrome and not Down syndrome; though the issue with food is common among orphans. Since Kara is not a typical child, I believe the issues is compounded, whereas a typical child adopted from an orphanage would eventually trust that food will always be available to them, Kara continues to feel stressed about it. I do tend to give her anything she asks for within reason, a banana, a slice of bread with butter, a drink of juice. She loves fruit but prefers softer choices. She also adores corn chips! She is chubby though, her little pot belly is making it hard to snap her pants, yet the next size up is 4 inches too long for her.

She is getting better about making her needs known, and will bring cups to me if she wants a drink. She has been known to throw said cups at my head as well, but that happens rarely. We are trying to figure out how to find a way to block off the kitchen to her, but she is resourceful and will likely find a way around it.

If not for that behavior, she would be a complete joy; she is silly, loves comedies that involve slapstick humor and has the most infectious giggle. She is loving towards family, loves snuggles and kisses. Adores pretty clothes (you know that makes me happy) but hates wearing shoes. She is learning to play without hurting her sisters. She and Meghan love each other and Meghan often leads Kara around the house by the hand, I hear “Come on Kara” all day, at least when I am not saying; “No Kara, out of the kitchen Kara”. Considering one of the reasons we wanted to adopt another little girl was for Meghan to have a sister who would understand her and vice versa, big sister Julia is 8 years older and too old for playing dollies. Kara and Meghan are truly sisters in every way! Now Amanda seems to be the little sister who just gets in the way, but wait until she is walking! She is small, but strong and mighty!

Amanda is growing and changing, she obviously loves her daddy above all the rest of us. You can see that she is maturing emotionally; it is obvious that she loves the company of others, but she still prefers to sit alone outside doing one of many of her repetitive behaviors. It seems a lot of them have decreased, but there were plenty to begin with and she self stim’s with the best of them. One behavior gets very tiring; she will sit with us, grab the necklines of our shirts and pull until they stretch and sometimes rip. She also likes to scratch us while doing this. It is strange because she will sit there perfectly happy and then just reach out and do these things, no reason behind her actions. impulse control issues I suppose.

We are having issues with the kittens biting her hands and scratching her. I believe that she causes most of the problems by putting her hands in the cat’s mouths and pulling on their jaws. She gets retaliation for this from the assaulted felines, but like Kara, she continues to do it afterwards. Slow to learn a lesson, a common theme with our little girls. I put hand cleaner or vinegar spray on Amanda's hands; both taste terrible, and it deters the kitten who bites her fingers the most, seems to work. The kitten also gets a spray with the water bottle.


We have been woefully unable to get a PT for either she or Kara, our other therapists have asked their PT friends, our services coordinator has looked, and no one is available. Our state is cutting budgets to the extreme and human services jobs are being cut left and right; this includes social workers, services coordinators, therapists, teachers, etc. It is a travesty that they are taking away from the very population that cannot vote; the disabled community. Of course they have met the ‘in your face” parents like those of us who advocate for our children, and the state backed off from cutting all Early Intervention services last year, but it took it's toll on the therapist community and availability, many quit seeking job security. They have a battle on their horizon if they think they can take anything else away from our children.

My girls have not lost anything because they have long term care. I am certain the state will find a way to take from that too given time, they are already discussing cutting respite and habilitation from families who care for a member with a disability. They try to scare us regular folks by saying they are cutting police and fire department workers to balance their budget, but if you truly pay attention, you would know that was a flat out lie. Many of our government workers take furlough days, unpaid days that they all complain about. I believe they should have to sacrifice like the rest of us, my husband, also a state employee; he has not received a raise in 2 years. Yet our insurance has gone up, so we actually get less than we did two years ago. All of us are tightening our belts, they can too. They can also stop trying to scare folks into voting for more money in budget overrides stating that we do not have enough police on the streets. I beg to differ, they are there, they are just not doing their jobs. I cannot count the number of times I see two or three police cars in parking lots for two hours or more, just sitting there, maybe doing paperwork, or maybe eating, but they are not on the streets where they are supposed to be. Seems the paperwork should be done at the station after their patrol hours are over.

Two years ago a woman living one door away from us was abducted from her home, they believe Kay was murdered. The day her sister reported her missing there were 30 police cars in front of and on the side of our house. 30!! Yes I counted them; our house was cordoned off, and I had nothing else to do. None of them were needed at the crime scene and I heard the commanding officer tell them to leave. Kay was already gone; they had found her burning van down the street. The officers just wanted to be where the action was. So who was patrolling our streets then? Who was making sure we were safe? The same holds true when any major crime occurs in town, dozens of police cars rush to something two can handle. We do not have a shortage of police; we have a shortage of common sense and work ethic. And no, they never found Kay; it will be two years Valentine’s Day. Her family suffers not knowing what happened to her. Her house sits empty with a poster affixed to a sign asking for anyone to come forward with information. I am not certain how long they will let her house sit there like that, but for those of us living here; it is a constant reminder that life can go wrong very quickly and out neighborhood is not all that safe, but truly, what neighborhood is? Our doors are locked at all times.

Will you pray for the girls?

If they are feeling OK this morning, Amanda and Meghan are having sedated dental work done. I always get nervous when the girls go under, if you can add all of us in your prayers, I would appreciate it so much. I know it is not major surgery, but sedation is not without risk.

Trisomy 21 Translational Research Parity Act Introduced in Congress

News from DSRTF (Down Syndrome Research and Treatment Foundation) I have not read through the entire text, but I will pose this question; How in the world will our government pay for any new programs? I love that someone is trying to help people with Down syndrome, and I pray this passes for my girls and for their and everyone with Down syndrome future. Take the time to read through, write a email or call your representative or Congressman/woman and explain WHY it is important to your family.

The text from DSRTF:

Trisomy 21 Translational Research Parity Act Introduced in Congress–
Importance for Down Syndrome Biomedical Research and New Opportunities
On September 25, 2009, the Trisomy 21 Translational Research Parity Act of 2009, or the “21 Act” (H.R. 3656) was introduced in the US House of Representatives by Representatives Cathy McMorris Rodgers (R-WA), Patrick Kennedy (D-RI), and Pete Sessions (R-TX). A companion bill (S. 1762) was introduced on October 7, 2009 in the US Senate by Senators Sam Brownback (R-KS) and Sherrod Brown (D-OH). The “21 Act” represents an important critical step in expanding and coordinating Federal support for Down syndrome biomedical research, including translational research to convert the results of basic biomedical research through clinical trials into new therapies, and specifically includes:

Development and initial funding for a National Down Syndrome Patient Registry and Biobank; Establishment of at least six Down Syndrome Translational Research Centers of Excellence; and, Establishment of a Down Syndrome Coordinating Committee to coordinate activities across the National Institutes of Health, Centers for Disease Control and with other Federal health programs and activities relating to Down syndrome.

The text of the “21 Act” can be found through this link. A summary is attached below.

The Down Syndrome Research and Treatment Foundation (DSRTF) has worked closely with the sponsors of the legislation, as well as Down syndrome organizations and biomedical researchers and physicians to ensure this legislation addresses critical needs for advancing new and recent biomedical research progress and potential new therapies for all individuals with Down syndrome.

How you can help:We need to educate Members of Congress on the importance of enacting the Trisomy 21 Translational Research Parity Act of 2009. There is much that yet needs to be accomplished to promote passage of this new “21 Act”. Additionally, while the recently introduced “21 Act” includes initial funding appropriations for the National Down Syndrome Registry and Biobank, specific funding appropriations for the Down Syndrome Translational Research Centers of Excellence will require additional Congressional action. As you know, NIH funding for Down syndrome biomedical research has been, and continues to be, disproportionately and extremely low. We must continue to work together to increase Federal funding.

You can support this effort by contacting your Senators and Representative to ask that they join as co-sponsors of this legislation. You can easily find contact information for your Senators and Representative and use the supporting draft email/letter through this link.

If your House Representative is not already a member of the Congressional Down Syndrome Caucus, this may also provide a great opportunity for you to include an additional note or separate email asking that they join the Congressional Down Syndrome Caucus. To see whether or not your Representative may already be a member of the Caucus, you can review the current list of members through this link.

Since being founded in 2004, DSRTF has become the largest non-governmental source of funding Down syndrome biomedical research focused on cognition and generated more than $5.6 million to fund critically needed major new results-driven research, with exciting advances, to improve cognition for individuals with Down syndrome. As DSRTF continues to grow and advance its efforts with your much appreciated support, it is also critical that increased Federal funding for Down syndrome biomedical research becomes a reality to sustain and extend new advances to create deserved new opportunities for all individuals with Down syndrome. Thank you for your efforts and help.

Trisomy 21 Translational Research Parity Act of 2009 (S. 1762/H. 3656) - Summary

Down syndrome, or Trisomy 21, as it is called within the medical community, is caused by an extra copy of the 21st chromosome. There are more than 400,000 people living with Down syndrome in the US. An error in cell division, called non-disjunction, happens during development of reproductive cells prior to conception for reasons which we still do not understand. The extra chromosome causes varying degrees of cognitive impairment and physical abnormalities.

Persons with Down syndrome can also have a wide range of health problems, including congenital heart defects, obstructed digestive systems, thyroid conditions, hearing problems, leukemia, increased susceptibility to infection, sleep apnea, and respiratory problems. Individuals with Down syndrome also are at a higher risk of developing Alzheimer's disease, epilepsy, autism, and many neurological and psychiatric disorders, including obsessive-compulsive disorder and depression.

The Trisomy 21 Translational Research Parity Act of 2009 (the 21 Act) would establish an infrastructure within the Department of Health and Human Services (HHS) to facilitate results-oriented research, forge new partnerships between academic institutions and clinics to work together to conduct translational research, produce targeted-funding opportunities, and help to develop new interventions, treatments, and therapeutics for Down syndrome.
Translational Research: The creation of Down Syndrome Centers of Excellence at the NIH would integrate basic and translational research and move findings efficiently toward clinical applications in Down syndrome. Research conducted on Down syndrome may also have spinoffs that increase knowledge about other areas of research, diseases, and conditions. Through outreach and communication efforts, the Centers will inform researchers and the public of scientific advances and improvements in medical care.

As you may know, the Children's Health Act of 2000 (Public Law 106-310) amended the Public Health Service Act and included a number of provisions that addressed the research and surveillance needs of many disabilities (e.g., autism, traumatic brain injury, Fragile X, juvenile diabetes, asthma, epilepsy). However, this landmark legislation did not address the significant research, surveillance, and clinical care needs of Down syndrome and thus has been an impediment to progress in the Down syndrome research community over the last decade. The 21 Act attempts to incorporate Down syndrome as an area of permissible research and surveillance at the National Institutes of Health and the Centers for Disease Control and Prevention and will foster a better understanding of Down syndrome.

Coordination: The 21 Act would expand, intensify, and coordinate translational research on Down syndrome across government, academic institutions, Down syndrome clinics, and industry. Research and funding would be supported by administrative and program staff at the Department of Health and Human Services (HHS) and the individual NIH Institutes and Centers. The bill also calls for the establishment of a Down Syndrome Coordinating Committee, which includes Federal agencies and members of the public appointed by the HHS Secretary, to coordinate activities across Federal health programs and activities relating to Down syndrome.

Surveillance: The 21 Act would provide resources to build a National Down Syndrome Epidemiology program by constructing a National Down Syndrome Patient Registry and Biobank, through cooperative agreements at the CDC. The National Down Syndrome Patient Registry and Biobank would:

Establish a centralized or distributed brain, cell, tissue, DNA, and RNA bank;
Characterize a cohort of patients for genotype-phenotype investigations to inter-operate with the bank; and Correlate the nature and severity of cognitive deficits and age of onset and severity of dementia.

This comprehensive surveillance program would enhance the clinical care for patients with Down syndrome, help coordinate research and clinical activities through the Down Syndrome Translational Research Centers of Excellence with the activities of the registry and biobank, and create a common data entry and management system for Down syndrome patient data collection and analysis.