John Anton, former Chair of MASS (Mass Advocates Standing Strong) and active with the Mass. Down Syndrome Congress, The Arc of Greater Haverhill and Newburyport and other groups is featured in a story about Down Syndrome.  
 
Click here to read more.  

The House and Senate Ways and Means Committees are holding joint budget hearings.  The main public hearing for our comments and statement of priorities is on March 9 at Gardner Auditorium. However there are usually opportunities to share your testimony at the end of the hearings where officials such as Commissioner Howe testify on their agency budgets.  February 22 (Medicaid) and February 22 (DDS, MRC, etc.) in Fitchburg are two such examples. Go here to see the schedule.

Washington, DC – On Friday, February 10, 150 leaders of The Arc from across the country met with a variety of senior White House officials at a Community Leaders Briefing to ask questions and discuss issues facing people with intellectual and developmental disabilities (I/DD) (for Massachusetts attendees please see list below which includes towns). The session, held just for The Arc, included an unannounced visit from President Barack Obama. The President spoke of his commitment to people with disabilities saying, “I’ve got your back.”    Read on to see comments from the other speakers and pictures from the event.  Speakers included the Chief of Staff, Domestic Policy Director and the Attorney General’s leader on Civil Rights enforcement.  To see video of part of the day, go here. 

Read More Here.

Washington, DC – This week, five leaders of The Arc from Massachusetts will join 150 leaders of The Arc from across the country to attend a White House Community Leaders Briefing.   Over the course of the day, leaders of chapters of The Arc, including people with intellectual and developmental disabilities (I/DD), will be briefed by high level White House and Administration officials on topics ranging from Medicaid to education to community living and employment for people with I/DD, and have the chance to engage with and ask questions of these officials.  This day-long briefing is specifically for The Arc’s network, and comes just weeks before Developmental Disabilities Awareness month, which is in March and will be marked with efforts across the country to raise awareness of issues facing people with disabilities. 

Last week, Governor Deval Patrick released his budget recommendations known as House Two. Click here to read more and see our House Ways and Means FY’13 request.

 See Joan Venocchi's great column on Jame's birthday and Turning 22 in Sunday's Globe,

This tough economy has been doubly hard for children and adults and their families served through the Department of Developmental Services. Some of the House 2 budget decisions will not help alleviate what families are facing. The Arc and ADDP are finalizing with other groups priorities to share with house and senate members. Here is a foreshadowing of key priorities:

• The Family Support/Respite program - request restoration of $15.5 Million which includes the 2010 cuts
• Include a salary reserve of $28 Million for direct support staff and managers
• Maintain Transportation services as a separate line item and include annual costs for this year's Turning 22 students
• Add $1.3 Million to Employment and Day Service account to cover full costs

Read House 2 Report and Analysis. 

Today's Notes from The Arc is the link to this headline.

Governor Deval Patrick has released the highly anticipated state’s fiscal year 2013 budget. The governor has stated his commitment to put communities and families first.  We have seen that in action when last summer family support and day habilitation cuts were not implemented. Even so, we will need to strongly advocate during the next step of the budget process with House Ways and Means to restore Family Support Programs ($5.5 Million cut this year, $10 Million in 2010), Turning 22 which is still stuck at $5 Million despite 710 students and a salary reserve.  Our outline covers both bad and good news.  Read more at the link.

Governor Deval Patrick will release his proposed budget for next fiscal year (2013) on Wednesday.  Representatives of The Arc and ADDP met with administration officials last week to emphasize our concerns about the challenges faced by families and persons with disabilities over the past 3 years.

More than 4,400 persons with disabilities (conservative estimate) in need of some support have graduated special education programs over this 3 year period during the recession. At DDS (Dept. of Developmental Services), referrals for Turning 22 total approximately 2,100 people during this same time period. Annually at least 200 of the special education graduates headed to DDS are in urgent need of residential services. The rising numbers of adults turning 22 years with autism, complex medical conditions and other disabilities are finding few options with many choosing state plan services which do not provide employment options. Others are finding no alternatives.

Meanwhile employment funding at DDS and MRC (Mass. Rehabilitation Commission) has been frozen or cut with no follow along dollars at MRC for individuals placed in employment.   Two stories from this fall hit home. A middle-aged man of 57 years just entered a local housing apartment complex but his care is being coordinated by his parents who are in their 80s. No disability agency has prioritized him for funding or services. Needless to say, he will need more supports soon- his parents can't do it on their own. Another young man of 25 years with autism is at home without options since he has been deemed ineligible for DDS services after years of special education. With family support cut by $10 Million in 2010, this family and many others have no alternative.

Community programs managed primarily by non-profits have not received cost of living adjustments in years and salaries are trailing behind state employee counterparts. There was no raise for this group, despite a 3% raise for state employees this year. Health care premium increases are squeezing agencies financially too.

It's critical to make up for lost time as situations become more desperate for individuals and/or families in the community: New funding is needed for Family Support, Turning 22, Employment and Community Service Rates and Salaries.  

For other news from the January 23 issue of Notes from The Arc, please go here.

As we reported on December 7, 2011, MassHealth released a draft of its proposal to the federal government to combine Medicare and Medicaid spending and service delivery for persons with disabilities aged 21 to 64 years who qualify for both Medicare and Medicaid (also known as "dual eligible" project). We have posted background information and our response at this location (Medicare and Medicaid Combined).  The direct link to the response is here.

The Arc has one significant policy position that is different from other advocates, such as Independent Living Centers, NAMI-Mass and Health Care for All. We believe including long-term support services in a single blended rate to private managed care corporation(s) is, at best, risky and, at worst, could result in the reduction of those services if health care costs continue to rise. [Long-term support services (LTSS) are community-based services, such as residential, employment, and day habilitation.]

We also worry that other groups do not recognize the costs entailed in supporting individuals who have profound impairments in intellectual functioning with or without disabling conditions. PowerPoint presentations developed by MassHealth consistently feature charts reflecting the higher per capita cost of supporting persons with developmental disabilities through Medicaid. At the same time, we are trying to educate and have meet with Washington DC decision makers driving this policy change who are unaware of waiver services and the history of deinstitutionalization. A meeting coordinated by The Arc US with federal officials will take place in early February.

If you would like to read other news for this coming week- please see our Notes from The Arc here.