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HOME FIRST
Jeanne Clapper, Family Support Coordinator
Maria Sileshi, Case Manager
November 2011 |
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News for You and Your Family |
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Summer has come and gone, a new school year has started and soon the holidays and a close to 2011 will be upon us!
For families caring for a child with complex medical needs this can bring both joy and stress. Many of us are already spread way too thin, emotionally, physically and financially.
We'll focus this newsletter on some tips for getting through the holidays and finding supports where you need them. As always, we are just a phone call or a home visit away from you.
Wishing you all peace, health and happiness, perhaps if not today, then someday very soon! |
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About the Home First Program
Home First provides intensive support and case management for children and young adults, who meet DDS eligibility and criteria of complex medical issues, who are living at home with their families. Referrals throughout the Metro Region (Boston and suburbs) are made by the local DDS Office. Services include coordination of medical services and health care benefits, assistive technology, coordination of home nursing, educational services, assistance with home modifications and assistance with public benefits.
We hope you find worthwhile, valuable information in this newsletter and look forward to your feedback and ideas! Please feel free to share this newsletter, but remember that our enhanced family support services are only by referral from the Department of Developmental Services (DDS). |
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In This Issue
(click on subject to view)
NEWS
* Transition-New
Manual from the
Disability Law Center
* SSI -Increase $
* New Respite Home
* DDS Survey
SEASONAL RESOURCES
* Holiday Help
* Travel Tips
MEDICAL SPECIFIC RESOURCES
* G-tubes, J-Tubes, TPN
GENERAL RESOURCES
* Disability Rights
* Family Leadership Series
EVENTS
* FCSN Open House
* The Muppets |
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A Transition Services Online Manual
The Disability Law Center is now rolling out an online manual on special education transition services, available through: http://www.dlc-ma.org/manual/
This Manual is based on Massachusetts and federal law. It is written for parents and students who are advocating for better transition services, including social, vocational and independent living skills. It is written in an easy-to-understand format but also contains "Endnotes" and an Appendix at the end of the Manual with legal information for attorneys and experienced advocates.
The Manual was edited by the Disability Law Center (DLC), in partnership with the Federation for Children with Special Needs, the Institute for Community Inclusion, and Massachusetts Advocates for Children. It was written by the Northeastern University School of Law Legal Skills in Social Context program.
Please help spread the word about this Manual by sharing this information. DLC will be updating and improving the Manual on a regular basis. They plan to include more videos of students, parents and advocates, in English, ASL and Spanish, as well as updates on legal developments, new forms, and other practical advice. Please tell tell them how they can make this Manual better by using this feedback form.
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 Supplemental Security Income (SSI) Increase January, 2012!!
The Social Security Administration has announced that it will increase its monthly Social Security and Supplemental Security Income (SSI) benefits by 3.6 percent beginning in January 2012. SSA has also added 13 new conditions involving the immune system and neurological disorders to its Compassionate Allowances program. Compassionate Allowances speed up disability decisions
to make sure that Americans with the most serious disabilities receive their benefit decisions within days instead of months or years. These conditions include certain cancers, adult brain disorders, a number of rare genetic disorders of children, early-onset Alzheimer's disease and idiopathic pulmonary fibrosis.
For information about the COLA go to:
For information about the Compassionate Allowances program go to:
http://www.socialsecurity.gov/compassionateallowances/
What is SSI?
The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources. Income is determined by household, so it may be available to children whose parents are living separately if the custodial parents household income is within the limited income guidelines. However, once a child turns 18 their parents income is no longer considered in determining their eligibility.
What happens with SSI when your child turns age 18?
For disability purposes in the SSI program, a child becomes an adult at age 18, and we use different medical and nonmedical rules when deciding if an adult can get SSI disability payments. For example, we do not count the income and resources of family members when deciding whether an adult meets the financial limits for SSI. We count only the adult's income and resources. We also use the disability rules for adults when deciding whether an adult is disabled.
- If your child is already receiving SSI payments, we must review the child's medical condition when he or she turns age 18. We usually do this review during the one-year period that begins on your child's 18th birthday. We will use the adult disability rules to decide whether your 18-year-old is disabled.
- If your child was not eligible for SSI before his or her 18th birthday because you and your spouse had too much income or resources, he or she may become eligible for SSI at age 18.
For more information review: Supplemental Security Income (SSI) or contact toll-free at 1-800-772-1213 and ask for (Publication No. 05-11000).
If you are already in the Home First Program, call us and we will help guide you through this process! |
OPEN HOUSE: New Respite Home for Adults
A new state operated home for medically complex adults has been created by the Southeast Region of the Massachusetts Department of Developmental Services (DDS). The beautiful home located in Taunton Massachusetts is available for DDS eligible adults ages 18 years and above that meet the criteria of Medically Complex programs in the state. The Home has the capacity to serve up to three individuals at a time. Families in the Home First program can contact their case manager for more information on the home and to arrange stays.
We encourage you to visit the home by attending the open house events scheduled for:
Sunday, December 11th from 1pm- 4pm or Monday, December 12th from 10 am - 2pm
or call 508-824-3866 or 508-866-8867 to schedule an individual visit. |
DDS Survey for Families Regarding Family Support Due 12/8/2011
IMPORTANT family support survey from the Massachusetts Department of Developmental Services. PLEASE take a few moments to provide your valuable input. DDS is looking to hear from ALL of us about what we NEED. Please share widely so our collective voices are heard.
Here is the link for the survey:
http://xa.yimg.com/kq/groups/2415309/1964683214/name/Fam_support_survey_ENG_Final_11-17-11.pdf
You may have also recently completed a Family Caregiver Assessment, but this is different in that it is for Massachusetts only and directly from DDS! This is additional input to the DDS forums that have been going on across the state for families to provide information about what would be helpful to support their family member with disabilities at home and in their community. Especially if you were unable to attend one of the DDS family forums, please share your input!
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Holiday Assistance Programs for Boston & MetroWest
Here are some resources for we have found. Please share if you have found success with others and let us know how we can help!
- Globe Santa - www.globesanta.org - Families must write their own letter requesting assistance with an explanation of the family's need or circumstances. Letters must be countersigned by a licensed social worker (include current license number) who has previously registered with Globe Santa ...by NOVEMBER 30, 2011 this year!!
- Christmas in the City - for families in Boston shelters at: www.christmasinthecity.org
- Project Just Because- Families need to register electronically at www.projectjustbecause.org
- Salvation Army- Families should contact their local Salvation Army location and must apply in person. Find locations: www.salvationarmyusa.org/
- Toys for Tots- Go to www.toysfortots.org to make requests.
- Catholic Charities- Catholic Charities needs to be contacted by Diocese. View town info online at: www.ccab.org/ or ask at any local Catholic parish.
- Housing Projects- Many of the bigger housing projects sign on to various donor groups, and residents may be able to get gifts there.
- Places of Worship- Families may want to ask their local worship centers if they know of additional resources.
- Schools- Families may want to ask their child's guidance department or teachers if they know of additional local community resources.
- Town Clerk- Town Clerks tend to know much about what is offered in the communities they serve.
- Freecycle - www.freecycle.org - Families can post a "wanted" ad according to their local freecycle group guidelines and may be able to fill needs with gently used (or sometimes new) items other "freecyclers" are willing to donate.
If families do not have internet access for organizations requiring electronic registration, public libraries offer free computer use.
Families will need to follow whatever process is outlined by individual organizations and may need to present evidence of financial need.
Most holiday programs are time sensitive. Do not delay! |
Traveling With Family Members With Medical Needs
Traveling with a family member with medical needs is likely not as simple as purchasing tickets over the internet. It requires careful planning, especially if it includes airline travel. Special arrangements have to made with airlines, airport security, customs and others ahead of time in order to make the trip successful and with minimum delays. Please find below some tips on making your trip successful. - If possible, use a Travel Agency: Using a knowledgeable travel agency may be helpful in helping you plan for your trip. If you let your travel agent know your family's needs,( ie. Spacing on flight, equipments and supplies you will be traveling with, medical needs, mobility needs, behavioral needs), the agent will work with the airline, TSA and your doctors to make the arrangements. If using a travel agent is not an option for your family, you can do the following on your own.
- Contact Airlines: It is necessary to contact the airlines directly to explain your family's needs and discuss airline regulations and how the airline can accommodate for your family. Things to mention are your child's medical, mobility and behavioral needs, equipment and supplies you will be traveling with including medication, emergency procedures, and anything else that is unique to your family's travel. You can work with the airline to secure preferred seating and see if any accommodations can be made around baggage restrictions if you are carrying needed supplies and equipment. If you are using multiple airlines for connection, please be sure to contact each airline. If required or needs, ask the airline if they are able to assign a staff member to assist your family at the airports.
- Contact TSA: It is also necessary to contact the Transportation and Security Administration (TSA) to explain your family's needs so that special arrangements can be made for your family in order to get through security checkpoints with the least amount of issues. Everyone will need to go through a security checkpoint. You will need to mention all the items mentioned above for the airline, and highlight items that are necessary for you on the plane (such as all medications, supplies, any liquids such as formulas, etc...) and any medical equipment/supplies you need. For more information, please read the below information from the TSA.
http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1572.shtm
http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm
- Doctor's Notes: Talking to your doctor ahead of time regarding trip planning is of course an important step as your doctor can advise you how to keep your family member safe during your trip and also advise on items necessary for your family member on your trip. In addition, your doctor (s) may need to send various letters in advance to the airlines and/or TSA contact persons you have been communicating with in order to verify your family member's needs. We advice that you also travel with similar letters from your doctors' offices in case you run into any issues while at the airports. The letters should be originals, on the doctor's letterhead, signed and preferably notarized at the doctor's office and should highlight your family member's medical condition, equipment and supply needs (what he/she needs on the flight) and if appropriate a note on any protocol to follow in case of emergency.
- Customs: If you are traveling internationally and are traveling with many supplies (such as a large amount of formula), you may run into questioning at the customs office at your point of arrival. Depending on the country you are going to, a notarized letter from your doctor explaining that you need the supplies for your family member should appease the customs office. However, it is good to check with the embassy of the country you are going to to see if there is anything else you can do to not have any issues from the customs office. Embassies are also able to write you an official letter to help you get through customs without issues or having to pay any fees.
- Arriving Early: It is safe to assume that it will take some additional time to go through the various checkpoints at the airport. Arriving early will help you make your flight without delays.
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Kids with Tubes
An informative website that explains all the types of tube feedings along with the pros and cons of each type. Also includes FAQ's and even video "How To's" for those new to tubes. Stay tuned for the next tube feeding awareness week in February, 2012!
An informative website that explains all the types of tube feedings along with the pros and cons of each type. Also includes FAQ's and even video "How To's" for those new to tubes. Stay tuned for the next tube feeding awareness week in February, 2012!
Blenderized Diets
Nissen Fundoplications: Pros and Cons
Kids with Tubes News, while no longer active as a newsletter connecting parents and caregivers of tube-fed children, these parents still provides the following articles which may be of interest.
The Decision to Place a Feeding Tube
Includes articles from a gastroenterologist, speech pathologist and dietitian describing the factors to be considered. Five families share their stories and describe how they decided on placing a feeding tube in their child. A glossary of commonly used terms is also included in language easily understood by non-professionals.
Daily Life with a Tube-fed Child
Includes a collection of thoughts and ideas from parents on a wide range of daily concerns including managing the tube, social issues, reflux, travel, and school. Articles on coping with granulation tissue, working with an insurance case manager, and obtaining home healthcare supplies are a few of the professional contributions in this issue.
Therapies for the Tube-fed Child
The therapies covered within this issue include Sensory Integration, Oral Motor/Oral Sensory, Speech and Language, Physical Therapy, and Group and Individual Feeding. Coupled with several articles are contributions from families describing how they have benefited from the given therapy and, where appropriate, how they have incorporated it into their home routine.
Nutrition for the Tube-fed Child
This issue includes a variety of articles covering basic nutrition, fluid requirements, and considerations for selecting formula for tube feedings. Also in this newsletter is an article promoting water for overall health and a discussion of food allergies. And, there is practical guidance on homemade formula and calorie enhancers.
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FREE Disability Rights Web Course
A free, self-paced web course available 24/7 that provides an overview of disability rights laws. The course takes approximately 2 hours and includes real life scenarios, quizzes and a final exam.
Upon completion of this course, you will:
- Have a general understanding of the major federal disability rights laws (the Americans with Disabilities Act, the Fair Housing Act, Section 504 of the Rehabilitation Act and the Air Carrier Access Act)
- Be able to assess what laws apply in different discrimination scenarios
- Have resources for help and information about disability rights laws
Continuing Education Credits:
- Commission on Rehabilitation Counselor Certification (CRCC): 2 credit hours
Who should take this course:
- People with disabilities
- Advocates for people with disabilities
- Lawyers and law students
- Rehabilitation counselors
- Social service providers
- Anyone with an interest in disability rights laws
Register at any time for this free web course at www.DisabilityRightsCourse.org.
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MFOFC Family Leadership Series - Applications due 12/30/2011
Metro Boston and Northeast Region Overview
Lead your family and your loved one with a disability into the future. Apply now to be part of the next Metro Boston Family Leadership Series beginning in January, 2012. The series of two day workshops are at no cost to participants.
The MFOFC Family Leadership Series focuses on supporting families and individuals to live in their communities as naturally and typically as desired. Applications from families with children or adult family members of any age with any disability are encouraged.
The MFOFC Family Leadership Series has a two-fold purpose. The first is to offer information about "best practices" for people with disabilities. The second is to assist families in creating a vision for their family member and a process to achieve the vision by incorporating that information.
Families who have completed the Series during the past fifteen years have had a tremendous impact on systems change for families and individuals with disabilities in Massachusetts. Family members have been active in policy and decision making locally, regionally and statewide and some have decided to do legislative advocacy work. Some families have been involved in community organizing and advocacy on a local level. Others have used their talents and skills to create change for their child with a disability and/or their families.
Be the change you want to see in the world! Learn more here.
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Upcoming Events
12/1/2011: The Federation for Children with Special Needs Open House - Free & Open to the Public: December 1, 2011, 4 p.m.- 7 p.m., at their new offices at The Schrafft Center, 529 Main Street, Mezzanine Level - Room 1M3, Charlestown, MA. Featured Guest speaker is Bill Henderson, author of The Blind Advantage, How Going Blind Made me a Stronger Principal and How Including Children with Disabilities Made Our School Better For Everyone. Bill was also principal of the O'Hearn Elementary School in Boston, which served an ethnically and economically diverse student population, about a third of them having mild, moderate, or significant disabilities. To attend the Open House, please RSVP to wmorton@fcsn.org call 617 236-7210 or visit www.fcsn.org
12/3/2011: The Muppets, Sensory Friendly Films - Braintree and Burlington Now Added! Also, Framingham, Tyngsboro, Dartmouth and Methuen, The AMC Movie Theatres and The Autism Society of America provide families with autism and many ("our kids") other disabilities an opportunity to enjoy fun films in a safe and accepting environment. The auditoriums have their lights up, the sound turned down and audience members may get up and dance, walk, shout or sing. For more information contact the AMC Movie Theaters or the Autism Society of America. Movie ticket prices apply, but environment is "disability friendly".
Don't forget to apply for funding for conferences through the Massachusetts Developmental Disabilities Council (MDDC), Council Empowerment Funds program. Call 617-770-7676, ext 115 or visit the Council Empowerment Funds Program Web site. The Massachusetts Developmental Disabilities Council provides funds for individuals who are legal residents of Massachusetts with developmental disabilities and/or a family member or guardian to attend conferences or other events in Massachusetts or another state. Applications must be received and approved before the event. The Council will respond to requests based on set program guidelines. |
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About HMEA
HMEA supports 2700 children and adults with developmental disabilities and their families in more than 110 Massachusetts communities. Our supports include education, residential, day habilitation, employment and family resource support. We are committed to creative strategies that increase community inclusion and independence. Incorporated in 1961, we have a long history of providing special education, residential, employment, and case management services. We have long believed in the "power of dreams": helping people to realize their dreams and to become active and productive members of their community. "We believe in the power of dreams and NOT the limitations of disabilities. Reach out for Independence.
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Jeanne Clapper - About Me...
I have been the coordinator of the Home First Program since July, 2007. At that time my youngest child was heading off to first grade, my middle child was entering middle school and my oldest was attending Kennedy Day School.
Although I wasn't actively looking for work at that time, a member of the special needs community whom I had contacted as a resource mentioned this opening at HMEA. Immediately upon learning more about it, I was hooked! Helping other parents, like myself, navigate the maze of special needs services (or sometimes lack thereof) was near and dear to my heart. While trying to advocate for my daughter's needs, I sometimes became overwhelmed, defeated or I was just plain exhausted! Yet, each time I met another parent of a child with special needs, especially those with significant challenges, I gravitated to them to share resources, understanding and connection....that very special bond that we parents of children with special needs find when we are in the company of others who walk a similar path. This newsletter is for each of you and for those who support us in this journey. |
Maria Sileshi - About Me... 
I joined HMEA in January of 2011 after seeing an email from Jeanne Clapper giving notice of the job opening on the MassFamily Voices list serve, a list serve for families of loved ones with special needs and professionals in the field as well. As a parent of a child with special needs, I had found the list serve extremely resourceful in accessing services for my daughter and also connecting with other parents. Little did I know that it would lead me to a position that has been an amazing gift to me not only professionally but also personally. I am enjoying meeting
the families that I work with, I learn so much from the strength, wisdom and beauty that each has.
For the last 8 years prior to joining HMEA, I have worked in not for profit organizations in Massachusetts as an advocate and case manager for families and children, for four years in the adoption and humanitarian aid field in the US and Africa, for two years doing diversity advocacy, for another two years supporting immigrant and refugee families in the US access services. I enjoy doing the work of supporting and empowering families, and I look forward to continuing this work at HMEA and supporting you in any way that I can. |
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Disclaimer
HMEA/HomeFirst provides no warranty, whether express or implied, of the merchantability of the Software or its fitness for any particular purpose. In no circumstances will HMEA/HomeFirst be liable for any damage, loss of profits, good-will or for any indirect or consequential loss arising out of your use of the Software, or inability to use the Software, even if HMEA/HomeFirst have been advised of the possibility of such loss.
By downloading software or clicking on links, you agree to the terms of this disclaimer. |
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