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HOME FIRST
Jeanne Clapper, Family Support Coordinator
Maria Sileshi, Case Manager
February 2012 |
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News for You and Your Family |
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With February school vacation now behind us, winter will (hopefully) be coming to an end in the next month or so. It is not too early to begin thinking and planning for the summer months. While a lucky few may be able to enjoy a camp experience, many more cannot. While schools must provide extended school year services so as to prevent regression, they sometimes do not provide the extent of services that happen during the school year. Shorter days and weeks at home in August can wreak havoc on a family's finances and emotional well being. We hope to share some ideas and resources for summer camp, respite and other ways to manage stress associated with caring for a loved one with intellectual disabilities and complex medical issues which sometimes hits a crescendo in the hot, humid, dog days of August!
We also hope to see many of you at the upcoming "Visions of Community" conference hosted by the Federation for Children with Special Needs
on March 10, 2012 at the Seaport World Trade Center, Boston.
Another hot topic for our families is around home modifications. We've shared some resources related to design, modification and funding strategies that have helped us to navigate this process with other families. Please do your research. We cannot endorse any contractor included here, but wish to share resources. Always ask (and contact) references!
As always, we are just a phone call or a home visit away from you. Please share your feedback so we can improve this newsletter and our services. |
 Spectacular Summer Strategies (aka Surviving Summer)
FCSN Summer Campshas a comprehensive listing of a variety of summer camps ranging from pretty typical special needs camps to camps for chronically ill or disabled and even vent dependent camps. On Cape Cod, you can attend as a family and experience "camping" in cabins in iNickerson State Park  if you are chosen as one of the lucky families for a FREE week camp experience with Dream Day on Cape Cod! |
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Before During After
Home Modifications: Design and Resources
As your children grow and they become more difficult to lift and transfer there are options available to you whether you own your own home or rent an apartment. For homeowners or renters alike, the first step is understanding what needs to be modified. Some situations will require installation of overhead ceiling lifts because perhaps a Hoyer lift doesn't clear the doorways or no longer provides a safe and effective means of transfer. Others require modifying a bathroom to include a roll in shower so that lifting and transferring is no longer necessary. Still others require more extensive modifications such as moving an inaccessible, upstairs bedroom to the first floor. And of course some will require all of these modifications in order to keep your child at home and prepare for the future. Don't lose hope! There are programs that can help make this a reality and although it will take time, patience and perseverance it can happen!
Understanding what you need today is great, but it is also important to look toward the future. Thinking about your child's growth in five or ten years as well as your ability to perform the repetitive lifting and transferring should certainly be considered. Many programs are one time only supports, so the changes you make today will need to support you and your loved one into the future.
If you are uncertain about what should be done or if you have some difficult design considerations you may want to involve someone early on in the design process to help with focus a design that will consider your needs today as well as into the future. A few resources are included here:
- Solutions for Accessibility: Jacqueline Dobson, founder and senior designer, brings not only 20 years of experience in customized access design, but also a medical/therapy background, and the knowledge and components of medical, rehabilitation and medical equipment issues, and integrates those important factors into a customized design, product selections and specifications that suits the individual's needs now and into the future. Contact her at: 617.923.8877 or 877.923.8877 or on the web at: http://www.solutionsforaccessibility.com/
- Safe Home Connections: Utilizing the concept of a universal home environment, Safe Home Connections will help make your living environment safe and healthful in a manner that does not sacrifice style for function. Trained professionals will perform an on-site evaluation and thoroughly examine every aspect of your home for safety and accessibility. SHC will prepare a complete report of findings and recommendations. Conact Rena Hannaford MBA, CEO at Safe Home Connections 978-658-2131, email rhannaford@safehomeconnections.com http://www.safehomeconnections.com
- Operation Independence, LLC is an accessibility construction company serving the greater Boston area. We are CAPS certified (Certified Aging in Place Specialists) and have been in business for over 16 years specializing exclusively in the assessment, design and construction of modifications that allow people with physical challenges to achieve greater mobility, independence and safety in their homes. We install grab bars, stair chairs, threshold free showers, wheelchair ramps, elevators and much more! Our expert crew has completed projects for both adults and children with special needs. Contact Rick Castino, President at 617 923 4545 or e-mail: rickcastino@comcast.net
- HomeFreeHome.org is a group of volunteer Architects who design barrier-free home renovations that allow people to live with greater safety, freedom and dignity. HFH connects people with disabilities to local volunteer architects to create designs for small-scale construction projects such as; ramps, accessible bathrooms and kitchens. Low-income homeowners, particularly elderly, physically challenged and families with children who are not able to afford an architect are eligible for our services, as are the non-profit facilities that serve them. If your family income exceeds the financial limits you may be eligible for low-cost architectural services. We use HUD income standards and each application is reviewed on a case by case basis.
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Funding Your Home Modification
Home Modification Loan Program
What is the Home Modification Loan Program?
The Home Modification Loan Program (HMLP) was established by the Massachusetts legislature to provide loans in amounts between $1,000 and $30,000 for modifications to the primary, permanent residence of elders, and individuals with disabilities. These loans allow homeowners in Massachusetts to remain in their home and must specifically relate to their ability to function on a daily basis. The program is funded through a state-bond and the loan is secured by a mortgage in order to guaranty repayment, but usually only upon sale or transfer of the property. These repaid loan funds will be lent out to other borrowers in the future.
What kinds of projects are eligible?
In order to be financed by an HMLP loan, modifications must relate to the functional limitation of the beneficiary as documented by a professional with whom there is a client history. Projects that are not directly related to the beneficiary's ability to function on a day to day basis are not eligible for financing under the HMLP program. Some examples of projects funded through this program include ramps, hardwired alarm systems and other safety modifications, as well as accessible bathrooms and kitchens.
What types of loans are available?
Loans are made available in amounts from $1,000 up to $30,000. Applicants are eligible for a one-time per property loan and cannot apply for additional funds after the project is complete even if the initial loan was for less than the $30,000 maximum. Therefore, all needed modifications should be strongly considered looking at not only today's needs, but anticipated growth and aging of the family members.
Loans are secured with a promissory note and a mortgage. This program offers 0% or 3% deferred payment loans (payable upon sale/transfer) and 3% amortizing loans depending on the income of eligible households. Some landlords may be eligible for a 3% loan for a tenant.
What are the 2012 Income Guidelines?
Income guidelines are based on HUD published median income for the Boston MESA and are updated annually. 2012 Income Guidelines are as follows:
| 2012 | Up to 100% of Median Income | 100-200% of Median Income | |
Household
Size | 0%(Deferred Payment Loan) | 3% (Amortized Loan) | | 1 | $68,500 | $137,000 | | 2 | $78,300 | $156,600 | | 3 | $88,100 | $176,200 | | 4 | $97,800 | $195,600 | | 5 | $105,700 | $211,400 | | 6 | $113,500 | $227,000 | | 7 | $121,300 | $242,600 | | 8 | $129,100 | $258,200 |
If homeowners are ineligible for the HMLP program, you may consider applying to The Massachusetts Assistive Technology Loan Program, operated by Easter Seals Massachusetts. It is an alternative financing project that gives people with disabilities and elders access to low interest cash loans to purchase assistive devices and services. The program has many options that can help - even for people who don't think they would qualify for a loan.
Easter Seals MA AT Loan offers Massachusetts residents with disabilities and their families low-interest cash loans they can use to purchase assistive technology, devices and services that will increase their independence. The program also loans low-cost assistive devices through its Long-Term Device Loan Program.
The MA AT Loan Program has many options that can help - even for people who don't think they would qualify for a loan.
Many different items are considered assistive technology, including home modifications such as ramps, lifts and widened doorways.
Catastrophic Illness in Children's Relief Fund is a reimbursement program which helps families bear the excessive financial burdens associated with the care of children (under 22 years old) with special health care needs and disabilities. CICRF is a payor of last resort. It provides financial assistance for Massachusetts families with children experiencing a medical condition requiring services that are not covered by a private insurer, federal or state assistance, or any other financial source.
En Espanol
MA State Knights of Columbus Charity Fund has been established to assist persons with intellectual disabilities, regardless of age, and children with physical handicaps who have not reached their 20th birthday. Maximum grant for handicapped ramps, wheelchair van conversions and stair lifts maximum amount of $7,000. The work CANNOT have been started or previously completed in order to be eligible. Additional requirements, including two quotations, are required to be considered for the charity fund. This process typically takes a minimum of two-three months, so plan early!
Other fraternal organizations such as the Elks, Shriner's, Lion's, Rotary, Masons Grand Lodge and others should also be considered as sources of possible charitable funding.
Community Development Block Grants are available in many communities across Massachusets and may provide funding for home modifications. Check here for a list of CDBG contacts by city/town.
Fundraising! Solicit the help of a group of good friends or family members and start the ball rolling! Many online websites are available for a nominal fee or percentage of the profits and you could be on your way. Elect a chairperson and a committe that does not include the family caregiver. This method, which can be fun and exciting, is usually too much of an undertaking for those already in the primary caregiver role. Check out sites such as: FirstGiving, GoFundMe to get started. And don't forget to include your local businesses who would likely be happy to put out a jar with a flyer!
Tax Deductions
For any expenses related to the home modifications and paid out of personal savings, you may be eligible for Internal Revenue Service deductions under medical expenses (capital expenses). You can include in medical expenses amounts you pay for special equipment installed in a home, or for improvements, if their main purpose is medical care for you, your spouse, or your dependent. The cost of permanent improvements that increase the value of your property may be partly included as a medical expense. The cost of the improvement is reduced by the increase in the value of your property. The difference is a medical expense. If the value of your property is not increased by the improvement, the entire cost is included as a medical expense. Check here for more informaion and guidelines about medical expense deductions: IRS Publication 502 Capital Expenses
Listen to Topical Conference Calls on various funding programs above such as HMLP, CICRF, Easter Seals AT Loan and much more. You can access and watch slideshows via your computer or even listen to an audio MP3 recording! |
New Respite Home for Adults
A new state operated home for medically complex adults (18+) 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 and tour the home by calling 508-824-3866 or 508-866-8867 to schedule an individual visit. |
In Their Own Words: The Need for Family Support Services
In our last newsletter there was link to provide input to DDS regarding the need for Family Support. DDS also spent time in each of the regions hosting forums to gather input as to what families need. The results of the DDS forums and the online survey are here: DDS Family Support Survey: In their words
Letting the legislature know what families really need is crucial in such difficult economic times. Why not share this report and your personal insight at the upcoming legislative reception?
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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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Upcoming Events
Starting 2/22/2012, Wednesday: Raising Renee: A new HBO film tackling disability caregiving
A new documentary chronicling one woman's experience as she assumes care of her sister with an intellectual disability is set to premiere on HBO on 2/22/2012 with availability on HBO on Demand in February. The documentary will be screened again on Saturday, February 25th at 3:20pm EST on HBO.
The film, "Raising Renee," follows Beverly McIver and her older sister, Renee, over a six-year period. An acclaimed painter with a flourishing career in the art world, McIver casually promised her mother that she would take care of Renee, who functions at the level of a third-grader, when her mother could not.
Find out more about this movie here.
3/1/2012, Thursday: Legal Transition Planning, Marlboro
"Legal Transition Planning & Public Benefits" with Annette Hines, Esq. Space is limited.
RSVP to Nicki L. Eastburn 508-481-3611 ext 7010 or by email at Neastburn@assabet.org
3/7/2012, Wednesday: Free Legislative Forum and Reception
"Investing in Real Lives"
Grand Staircase Hall, Massachusetts State House, 24 Beacon Street, Boston, MA, 10:30 a.m. to 1:00 p.m
The Massachusetts Developmental Disabilities Council & The Arc of Massachusettsinvite anyone with a disability, family members, advocates, state agency heads, their staff and legislators to interact and catch up on legislative priorities. Invited guests include Governor Deval Patrick, State Senators and Representatives, State Cabinet Secretaries, and Commissioners. After the program, visit your legislators to discuss legislative priorities and issues of importance to persons with disabilities. Team leaders will be available to escort small groups requesting assistance. Call your legislators to encourage them to attend the event and let them know of your planned visits after the reception. To determine your legislator call 774-455-7365 or visit http://malegislature.gov/people/search. For information about the Forum and Reception, call 774-455-7372 or e-mail smcandrew@donahue.umassp.edu or visit the MDDC's event page.
3/10/2012, Saturday: Visions of Community Conference
World Trade Center, Boston, 8-5 p.m. Childcare available onsite. Funding is available for Home First families.
A quote from a parent who attended last year's conference:
"Real, from the heart. The whole audience could make a connection."
The 2012 Visions of Community conference will feature 35 workshops in multiple languages, on a range of topics including the IEP process, advocacy, transition, & recreation, and showcasing more than 75 exhibitors. This is also a great time to network with other families and pick up free resources.
This is also a great time to network with other families, learn, support, connect...and pick up free resources.
3/14/2012,Wednesday: "Focus" on Vision Impairment & Blindness Conference
Four Points by Sheraton, Norwood, MA 8-3 p.m.
Meeting the Needs of Individuals with Intellectual Disability & Vision Loss
If this is not something you can attend, please pass it along to your school/program's vision teacher and staff!
5/20/2012, Sunday:
HMEA'S 11th Annual Independence 5K Walk/Run/Roll/Stroll
Register to walk, run, roll or stroll and create your own fundraising page at: HMEA Independence 5K or just save the date and come on out to Franklin to support us!
Please donate if you can at Home First Program Fundraising Page
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 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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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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