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Governor Malloy Appoints Jonathan Slifka to Cabinet-Level Position Advocating On Behalf of the Disability Community

January 9, 2014

 

(Hartford, CT) - Governor Dannel P. Malloy today announced that he is appointing Jonathan Slifka of West Hartford to a newly-created cabinet-level position within his administration, specifically advocating on behalf of the state's disability community.

 

For more information, view the link below:

http://www.governor.ct.gov/malloy/cwp/view.asp?Q=537754&A=4010

 

 

STAR, Inc., Lighting the Way is a member organization of The Arc of Connecticut. The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

 

A Leader in Disability Rights

The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families.  They encompass all ages and all spectrums from autism, Down syndrome, Fragile X and various other developmental disabilities.

 

Strong National Presence

With more than 140,000 members and nearly 700 state and local chapters nationwide, The Arc is on the front lines to ensure that people with intellectual and developmental disabilities and their families have the support they need to be members of the community.

 

Additional information about The Arc is available at http://www.thearc.org/ and information about The Arc of CT is available at http://www.thearcct.org/catalog/

 

 

NEWS FROM THE ARC OF CT

The Arc of CT Families for Families

May 13, 2014

 

(Hartford, CT) - The 2014 Legislative Session was a landmark session for those with I/DD and their families due to the hard work of families and supporters!

 

*$4M in funding for residential supports to individuals in need, moving people off the waiting list

*I/DD caucus formed, a body of 52 legislators committed to working with The Arc and families to focus on and promote good outcomes for individuals with I/DD.

 

Thank our supporters!

Senator Beth Bye (860) 240-0428

Representative John Hampton (860) 842-8267

Representative Jay Case (860) 842-1423

 

Bring Your Families to the Capitol for Lobby Day!

April 14, 2014

 

(Hartford, CT) - The Arc of Connecticut invites you to Bring Your Children & Loved Ones to the Capitol

for Lobby Day on April 16, 2014 at 10:30 a.m. - 1:00 p.m. in the Legislative Office Building, Room 1E.

 

Budget negotiations begin soon. Please join us and take advantage of this opportunity to speak face to face with legislators and do your part to protect funding that provides relief to individuals with I/DD and their families.

Arc Family Lobby Day

March 26, 2014

 

(Hartford, CT) - The Arc of Connecticut invites you to Famiy Lobby Day on March 26, 2014 at 10:00 a.m. - 12:00 p.m. in the Legislative Office Building.

 

Please join us in pursuing funding for:

 

*Provide funding and residential supports for individuals on the emergency waiting list

*Provide funding and residential supports for individuals on the priority list

*Increase transparency and accountability of DDS

*Provide funding relief to community providers

*Create a mechanism for DDS to better reach and serve its population

Family Hearing Day

Feburary 7, 2014

 

(Hartford, CT) - The Arc of Connecticut invites you to Famiy Hearing Day on Feburary 7, 2014 at 11:00 a.m. - 1:00 p.m. in the Legislative Office Building, Room 2D.

 

Join forces with The Arc of CT and Families for Families to support and advocate for the critical support needs of all Connecticut residents with I/DD and their families. Help repair the 

infrastructure, resources and vision necessary to promote those rights that are lacking. 

Share your stories, needs and examples to make a difference.

To learn more about The Arc of Connecticut, visit :

http://thearcct.org/catalog/index.php?osCsid=na327nob8krtnlkadn0eaenqi6

CT Waiver Program to Serve 100 More Medically Fragile Children

June 30, 2014

 

 

(HARTFORD, CT) – Governor Dannel P. Malloy today announced that Connecticut’s Medicaid program for medically fragile children, known as the Katie Beckett waiver, will be helping up to 100 additional families care for their children at home, instead of a hospital.

 

“I am proud that the General Assembly approved my proposal to expand this crucial service for families caring for children with significant disabilities,” Governor Malloy said.  “The Katie Beckett waiver is unique nationally in serving medically fragile children at home when they would otherwise need a hospital bed or institutional care.  In Connecticut, we are ready to increase participation by 50%--to a total of 300 children and young adults.”

 

Named after an Iowa child who left the hospital for home in the early 1980s, the Katie Beckett waiver program serves children and young adults under 22 years of age whose family income would otherwise be too high to qualify for Medicaid.  Because the program has a capped appropriation, there is invariably a waiting list.  Governor Malloy’s initiative adds $1.5 million in fiscal 2015 to begin serving 100 additional children and young adults with severe physical disabilities.

 

“Simply put, the Katie Beckett waiver gives children who would not ordinarily qualify for Medicaid a better chance to live at home with their families and participate in their communities, instead of living in hospitals and institutions,” the Governor said.

 

The additional funding will grow to $3 million when fully annualized, with half paid by the federal government.

 

“The young people served by this waiver program are eligible to utilize home health services under the Medicaid state plan, like all other Medicaid recipients,” said Department of Social Services (DSS) Commissioner Roderick L. Bremby.  “They also have access to all of the other same services under the Medicaid state plan, as all recipients do.  In most cases, these services are provided at no additional cost to the families. In addition to Medicaid, the families also receive case management that helps enhance the Medicaid package of services.  This is especially important in navigating the health care services needed to support children in the community.”

 

The Katie Beckett waiver is also essential for families that have exhausted their private insurance options for covering these types of services or that never had them available in the first place.

 

Barbara Scully, RN, is a nurse consultant who works on the program at DSS.  “I speak on a daily basis to parents of children on the Katie Beckett Waiver,” Ms. Scully said.  “Over and over, I hear how vast and sometimes overwhelming their children’s health care needs are and how much having Medicaid through the Katie Beckett Waiver means to these families.  These parents love their children, as all parents do, and want them home to enjoy being a part of the family.  I know I speak for all staff involved in this program to say that it’s an honor to assist families of children with disabilities in accessing Medicaid that allows their children to receive needed services and remain in the household.”

 

DSS staff have begun the process of contacting families on the waiting list to advise them of the next steps toward qualifying for the Katie Beckett waiver program.

 

Families for Families Campaign

 

CLICK HERE for information about staying connected with other families in Connecticut about state and federal program support. 

The needs of people with intellectual and/or /developmental disabilities (I/DD) and the ability of state and federal programs to meet those needs are in stark contrast.  Individuals with I/DD have the right to grow and thrive in the communities of their choosing, but the infrastructure, resources and vision necessary to promote those rights are too often lacking.   Families are uniquely positioned to effectively drive home the message that this is unacceptable and personally impact the decisions of policy makers.   The Arc Connecticut has always believed that with supports that reflect goals and personal aspirations, individuals with I/DD can grow and thrive in the community of their choosing.

Cutting Care for Connecticut's Disabled is Morally Wrong

May 3, 2016

A letter signed by over 90 interfaith clergy leaders from around the state was delivered to the governor and legislative leaders this week. In the face of repeated cuts to the DDS budget, it declared that “appropriate and just care of those with disabilities is a critical and yet an often hidden, unappreciated social justice and civil rights issue of our times.”

 

The letter implored our state leaders “to make just care for those with I/DD (intellectual and developmental disabilities) a priority in this year of difficult budget choices. These, God’s beloved children, have shouldered far too great a burden!”

 

Gov. Malloy, I applaud your welcome of refugees to our state and your support of those in our LGBT community. I applaud your fighting for a second chance for those who have been incarcerated.  BUT, as the parent of a young adult with I/DD, I need you to also welcome and fight for my daughter, Sarah.  I need you to give Sarah and her friends a first chance at a happy and productive life.

We should all be troubled by, and even ashamed of, the ongoing cuts to DDS. We should all have deep concerns and questions as our state coldly turns its back on those who are the most vulnerable among us, when what they need and deserve is the warm embrace of their community.

In my line of work, I frame this issue in the context of the Biblical imperative to care for the least among us. But even in the non-religious arena there is a moral obligation for a society to care for those who cannot care for themselves.

These are all our children! Should not care of these individuals be one of our core values?  Do any of us want to be part of a society that says no we cannot… we will not…care for our sons and daughters, our sisters and brothers who cannot care for themselves?  I know I do not.

Currently over 2,000 individuals languish on residential waiting lists with no hope for services unless caregivers die, or worse, they are in abusive situations. Budget cuts have now resulted in additional waiting lists:  approximately 100 people are waiting for day and employment supports and there is also a waiting list for much needed respite care as well.

 

In the current proposed budget, for the first time ever, our state is telling families of students with I/DD who are graduating from their local schools that they are on their own! There will be no help after your child turns 21.  If it means that a parent must quit his or her job to stay home with that adult child, so be it.  It is an unconscionable situation and I join other clergy and faith leaders in saying, “no more!”

Ultimately we are all judged by our acts, and the creation of a budget is one of our government’s most significant acts. We implore the governor and the legislature to pass a budget that makes just and humane care and services for people with intellectual and developmental disabilities a priority.

The Rev. Kathleen Peters is a retired minister of the United Church of Christ. 

Connecticut Legislators Hail Passage of Act that Supports Families of Handicapped

 

July 8, 2015

 

HARTFORD – Connecticut has long been a leader in supporting its residents who have developmental disabilities and the state lived up to that legacy in the 2015 legislative session by authorizing tax-free savings accounts similar to 529 plans for college education savings.

 

This important legislation will help families plan for the future of their disabled and handicapped loved ones.

The state’s legislation was a necessary step so that residents can take advantage of the tax-free accounts, which were made possible in December 2014 when the federal Achieving a Better Life Experience (ABLE) Act became law. Mirroring the broad bipartisan support the federal law enjoyed, Connecticut’s enabling legislation (H.B. 6738) passed both chambers of the General Assembly unanimously. Gov. Dannel P. Malloy signed it into law on June 19.

 

Connecticut’s enabling legislation authorizes the establishment of tax-exempt accounts in the state to help eligible individuals and families save private funds to support individuals with disabilities to maintain health, independence, and quality of life. The funds will cover disability-related expenses including education, housing, transportation, job training and a host of other essential needs; and supplement, not supplant, benefits provided through private insurance, Medicaid, SSI, employment, and other sources.

 

Four of the legislation’s co-sponsors and handicapped and developmental disability advocates, Sen. Tony Hwang (R-28) and Reps. Noreen S. Kokoruda (R-101),Catherine F. Abercrombie (D-83) and Christie M. Carpino (R-32), praised the state’s action in support of this landmark Act.

 

“Families who have a loved one with a disability work incredibly hard every day to provide support and unconditional love and care. They only want the best for their loved one, and the ABLE Act will provide them with another tool to further that mission,” Sen. Hwang said.

 

Rep. Carpino, who helped shepherd the bill through the legislative process as co-chair of the General Assembly’s Program Review and Investigations Committee, said, “All families in Connecticut will now have the opportunity to safeguard their children’s future. They will now be able to set aside money to plan for their loved ones and not jeopardize their future benefits. I’m proud that Connecticut will be in the forefront of states that are offering peace of mind to families of those with disabilities.”

 

Rep. Kokoruda said, “This legislation will impact the quality of life for so many of Connecticut’s people with disabilities and helps their families to provide for their future independence and healthy lives.”

“The ABLE Act will give families hope,” said Rep. Abercrombie, House Chair of the Human Services Commission. “All families are looking for is peace of mind that their loved ones will be taken care of. This legislation is a small step in that direction.”

 

Connecticut DDS Spared from Governor's Deepest Cuts 

 

June 10, 2015

 

(Senator Beth) "Bye said the Department of Developmental Services' budget was one of the most protected in a year of cuts, a reflection in part of the advocacy by families of people the department serves. "  Levin Becker, A (2015, June 3). Budget would cut health, social services, but less than gov's plan. The CT Mirror. Retrieved from  http://ctmirror.org Last week, both the House and the Senate passed a budget which will spare people with I/DD and their families from many of the deep cuts included in Governor Malloy's proposed budget. The budget will now go to the Governor for his signature.

 

The budget vote was very close, mostly split along party lines because legislators were not in agreement on how to fund the budget. One thing legislators did agree on throughout the session,regardless of political affiliation, was that they are no longer willing balance the budget on the backs of people with I/DD.  As a result, the final budget agreement reverses many of the deep spending cuts proposed by the Governor in February, replacing them with more modest funding reductions.

 

DDS Budget Highlights

 

Funding for Day Programs 

The Governor's proposed budget would have eliminated all funding for the 626 new graduates scheduled to age out f the school system over the next 2 years, creating a new DDS waiting list. The budget voted upon by legislators restores much of that funding.

 

Funding for Behavioral Services (Formerly VSP)

The Governor's proposed a 60% cut to the Behavioral Services program, a lifeline for families if children with severe often violent behavioral issues.  The budget voted upon by legislators restores 90% of those cuts. 

 

Funding for Autism Pilot 

There appears to be a slight increase in funding for the autism pilot program.

 

DDS Overtime Reductions

Some of the funding provided in the DDS Budget is offset by approximately $5 million per year in reduced overtime costs from the Department of Developmental Services. The department's reliance on overtime, particularly at state-run institutions, came under scrutiny upon release of the rightsizing Southbury Training School report issued early in the session by The Arc Connecticut

Families for Families

Advisory Council.

 

Our report identified millions of dollars in overtime at Southbury Training School and suggested that money could be better spent providing community residential services to people on the waiting list. (Please Note: DDS officials have stated that overtime has been used to avoid hiring new state employees.) 

 

Funding for Private Providers

The budget voted upon by legislators will give private providers a much needed 1% cost of living adjustment (COLA) in FY 17. 

 

Wage Increases for DDS State Employees

The DSS Budget provides a rate increase for DDS state employees of $12 million for FY16 and FY17. 

   

I/DD Caucus Bill SB 1088

SB 1088:AN ACT CONCERNING SERVICES FOR INDIVIDUALS WITH INTELLECTUAL DISABILITY, the I/DD Caucus bill, which would require the Commissioner of DDS to develop a plan to close Southbury Training School a plan to address the needs of ALL persons receiving or requiring services from The Department of Developmental Services passed by a vote of 25-10 in the Senate on May 27. 

 

This bill strongly advocated for by families, came as a result of the bold I/DD Caucus legislative agenda.  While we were disappointed that SB 1088 was never called for a vote in the House, we consider it a huge victory that this bill was raised and that legislators and families worked together to create a more fair, just and sustainable DDS system for ALL who need services. Be prepared to continue this conversation next session!

 

Family Day 2015

sponsored by The I/DD Caucus and The Arc Connecticut

 

Thursday, January 15, 2015

11:00 AM-1:30 PM

The Legislative Office Building, Hartford 

(snow date January 22, 2015) 

 

Last February, The Arc Connecticut and The I/DD caucus sponsored our first annual "Family Day". More than 300 families converged on the Legislative Office Building to show legislators with their presence and their personal stories that our DDS system is broken and it is hurting Connecticut families. After our hearing and throughout the last legislative session families continued to make their presence known through lobby days, house meetings, phone calls and emails. As a result our legislative I/DD Caucus has grown to more that 50 members and for the first time on more than 20 years funding was dedicated to the DDS residential waiting list without a lawsuit. But we still have a long way to go:

  • As of today, more than 2,000 people are currently on the DDS waiting/planning lists and that number continues to grow. 

  • There is no funding and no plan to move anyone off the residential waiting list in the absence of an emergency situation.

  • While the costs for public services continue to spiral out of control, most private providers have reached the point where they cannot sustain any more cuts.

  • Many employees of private community providers do not make a livable wage and nor can they afford health insurance for their own children.

DDS has a budget of $1.1 billion dollars. 

 

There is already enough money in the system to support everyone currently receiving supports and to make significant progress towards creating a more just and fair system of supports for those who are in need of services and for those who provide services. 

 

Lawmakers need to hear directly from you about how our broken system impacts your families and your loved ones with I/DD.  To register, click here. 

 

Governor's Intellectual and Developmental Disabilities Working Group Meeting

Thursday, November 13, 2014

2:00 p.m.

Legislative Office Building, Hartford

 

Families for Families: Creating A Better Future

Saturday, October 25, 2014

10:00 a.m. - 11:30 a.m.

The Arc of Meriden Wallingford

 

Join other families who are working to secure a better future for their children and loved ones.

Learn how families are working together to create DDS support system that works for ALL people with intellectual and developmental disabilities. 

 

I/DD Caucus Public Meeting! 

Tuesday, August 12, 2014

At 1:30PM 

Room 2A, of the Legislative Office Building

 

On Tuesday August 12, Commissioner Macy of DDS will give legislators and families a report on the current status and future plans for the $4.4 million in funds the Connecticut General Assembly allocated to provide residential services to individuals on the DDS Priority 1 waiting list with primary caregiver(s) age 70 or older. 

 

All who are concerned about the future of DDS residential supports and services should attend this meeting!

 

 

Important Information About The Waiting List Funds:

  • This funding came as a direct result of the advocacy of parents & families who believe that their loved ones deserve to be spared the trauma of an emergency residential placement and should have the support  & advocacy of their family as they transition out of their family home into a home of their own.

 

  • Families with caregivers age 70 or older may now choose from a variety of residential services that include Community Living Arrangements (CLA), Continuous Residential Supports (CRS), In Home Supports (IHS), Community Companion Homes (CCH), Shared Living and other creative innovative living arrangements.

 

  • If your family meets this criteria, your case manager should be meeting with you this summer to review your loved one's needs, explain ALL these options, and explore the type of residential setting that you would prefer. This is your choice!

 

  • This is the first time in many years that DDS has had funding to provide residential placements for individuals on the Waiting List.  We may not have this opportunity again any time in the near future.

     

Parents who have assisted their own children in transitioning from  family homes into homes of their own, are available to help and answer your questions you as you face this difficult decision!

 

We encourage you to contact us!

 

For more information contact parent mentor Lois Nitch, at 860 257-4334 or Shannon Jacovino from The Arc Connecticut at 860 246-6400, ext.102.